Your Stories We can give you all the information, facts, and support in the world. However, what we can't do is tell your story as well as... you. Personal stories are vital to Inflammatory Neuropathies UK's mission. They help us raise real awareness by hitting the emotional heart of the conditions. They help us support bids for research by demonstrating why these conditions need support. Perhaps most importantly, they help others in a similar position know they aren't alone. If you'd like to tell your story, contact hello@inflammatoryneuropathies.uk . You can either write your own, or be interviewed by a member of the team who will then create your story. We'd love if you'd be happy recording a clip of yourself speaking for social media as well! Megan's Story | MMN Jason's Story | GBS Leanne's Story | GBS Pedro's Story | GBS GBS - 21 Months On | Sue's Story Hand Control Driving | Julie Wilson's GBS/AMSAN Adaptions My Lake District Fell Dream | CIDP Paul's Story | CIDP Rowan's Story | Childhood CIDP Kathleen's Story | GBS Kevin's Story | GBS Recurrence To Hell and Back | Linda's Guillain-Barré Syndrome Story Nicole's Story | GBS Neil's Story | GBS John's Story | MMN Denyse's Story | GBS Dionne's Story | GBS Pete’s Story | AMSAN

200 Club Feeling lucky? Then join the Inflammatory Neuropathies UK 200 Club! 200 Club is a fun and easy way to raise funds for our support of conditions like GBS, CIDP, and MMN, while at the same time offering you the chance to win monthly cash prizes. The more people who join in, the bigger the pay-out for our lucky winners so spread the word to family and friends! Sign up here How does it work? It couldn't be easier. You pay £20 and receive an available number between 1-200 (this can be paid in one go or in two instalments of £10). This number will be part of the next 12 monthly draws including the annual Super Draw! On the second Wednesday of each month, the Inflammatory Neuropathies UK team draws numbered balls from a hat and if the drawn ball matches your number - you're a winner! We told you it was simple. You can watch the draw on our social media channels. Takings are split 50/50. 50% of your £20 will go to our charitable objectives, and 50% goes into the prize pot. There are three cash prizes to be won. First prize receives 40% of the monthly prize fund, while two lucky runners up will receive 20% each of the monthly prize fund. The mathematicians among you will have spotted that leaves an additional 20% of the prize fund - this goes towards our annual Super Draw in March, where one extra lucky winner will take home the grand prize! Winners will be notified after the draw via email/phone. Participants must be 18 or over and resident in England, Scotland or Wales. (Due to gambling regulations, this draw is not available to residents of Northern Ireland or the Republic of Ireland.) Please gamble responsibly #BeGambleAware https://www.begambleaware.org/ Terms and conditions The 200 Club will operate as a Small Society Lottery as defined by the Gambling Act 2005. Inflammatory Neuropathies UK is registered with North Kesteven District Council for this purpose. The object of the Club is to raise funds for Inflammatory Neuropathies UK. The subscription to the 200 Club shall be £20 per year per entry, payable in advance. Members may have and are encouraged to have multiple subscriptions. The subscription year runs from April to March the following year. There is no provision to opt in/out on a month-by-month basis. Anybody living in England, Scotland or Wales aged 18 or over can become a member of the 200 Club and you are encouraged to get family and friends to join. The 200 Club shall not be limited to 200 members. A member is eligible for inclusion in the draw for any month so long as the subscription has been paid. Each member is allocated a permanent number per entry in the monthly draw. This number shall remain the member’s number provided that their subscription is up to date. Members are not permitted to choose their own numbers. Numbers will be randomised and posted out to all members prior to the first draw of their membership. There will be a draw of 3 prizes per month, with an additional annual bonus prize to be drawn in March. The draw for each month shall be made on the second Wednesday of each month at 2pm. The draws will be made by a member of the Inflammatory Neuropathies UK staff, witnessed by at least one other person, and will be broadcast via video link to any member wishing to watch the draw. Monthly prizes will be awarded according to membership of the 200 Club for that month as follows: 20% of the annual net payments make up the monthly 1st prizes (12 prizes of 1.66% each) 10% of the annual net payments make up the monthly 2nd prizes (12 prizes of 0.83% each) 10% of the annual net payments make up the monthly 3rd prizes (12 prizes of 0.83% each) 10% of the annual net payments will make up the annual bonus prize The remaining 50% of the annual net payments will be allocated to Inflammatory Neuropathies UK funds winners will be contacted individually immediately after each of the prize draws. The Inflammatory Neuropathies UK 200 Club administrators will make all reasonable efforts to pay prizes to the winners within two weeks of the draw. Payment of prize winnings will be made by bank transfer. Unless otherwise advised, a member will be deemed to have left the Inflammatory Neuropathies UK 200 Club if his/her subscription renewal remains unpaid for a period of one month. If a winner cannot be contacted, the winnings will be placed into Inflammatory Neuropathies UK funds after six months. The decision of the Inflammatory Neuropathies UK management team shall be final in all matters requiring adjudication. The Inflammatory Neuropathies UK management team shall also have the power to amend or revoke these rules at their absolute discretion with such reasonable notice to the 200 Club members as is necessary. Thank you for your support If you have any questions regarding the Inflammatory Neuropathies UK 200 Club Rules of Membership, please contact Inflammatory Neuropathies UK by telephone 01529 469910 (Monday to Friday, 9am-3pm) or by email to hello@inflammatoryneuropathies.uk

Medically sourced information on Chronic Inflammatory Demyelinating Polyradiculoneuroapthy (CIDP) CIDP Welcome to our Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) Information Hub Here we breakdown what is happening to you or a loved in simple but proper terms. Our information is sourced from our Medical Advisory Board, medical texts, and recognised support providers. If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will strive to point you in the right direction. If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will strive to point you in the right direction. What is Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP?) We discuss the basics of CIDP – what it is, some of the symptoms you may experience, different types, and share some simple language explanations. Read More How is CIDP Diagnosed? We cover examinations, nerve tests such as (EMG and neurophysiology), and lumbar punctures. Read More Treatment for CIDP inc. Hospital Containing information on various treatments for CIDP, and discusses the concept of a 'cure'. We also cover how you can help someone with CIDP should a longer stay in hospital be required. Read More My child has been diagnosed with CIDP, what do I do? Contains information on condition management, paediatric intensive care, how you can help, rehab, going home, and an indepth look at return to school. Read More CIDP - Advice for Carers Entering a new role as carer for a family member can be daunting. We cover some pratical suggestions, and have some useful carer support links and resources for you to access. Read More Mental Health, Well Being, and Work following CIDP Diagnosis Contains information on how to care for your mental health whether you’re living with CIDP or a loved one had a diagnosis. We discuss sexual relationships, before a section on returning to work – how to approach and talk to your employer after an absence. Read More What happens next? We cover support and rehab, prognosis, physio, and pain management, hygiene, and finances Read More What is the advice surrounding vaccinations and CIDP? Containing information on vaccinations via our Medical Advisory Board and sourced journals. Read More Other Chronic Inflammatory Neuropathies Covering MMN, Lewis-Sumner, and POEMS Read More Anchor 1 What is Chronic Inflammatory Demyelinating Polyradiculoneuropathy This section will introduce you to Chronic Inflammatory Demyelinating Polyradiculoneuropathy, known more commonly as CIDP. What is CIDP? What are the Symptoms of CIDP? Acute Onset CIDP (A-CIDP) What is CIDP? Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called Chronic Relapsing Polyneuropathy , is caused by damage to the myelin sheath of the peripheral nerves. You need to have had symptoms for at least 8 weeks for CIDP to be considered. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. IN simple terms: Polyneuropathy Neuro means "string", or "nerve". Pathy , in the medical world, refers to a disorder or system of medicine. So Neuropathy simply means a condition impacting the nerves. Poly is a prefix meaning "many", so a Polyneuropathy is a condition impacting multiple nerves. IN simple terms: Peripheral Nerves Your brain and spine are called the Central Nervous System (CNS). T he Peripheral Nervous System (PNS) is the network of nerves carrying messages to and from the CNS across the body. They work together as the Nervous System. For example, if you see flames and smell smoke, these messages are passed along the PNS to the CNS. Your brain processes this information, and, realising there is danger, sends messages back along the PNS to your muscles, commanding you to walk, or wheel, to safety. IN simple terms: Myelin & Axons The Myelin is an insulating layer, or sheath, that surrounds nerve fibres, think of it as the plastic protective casing that surrounds an electrical wire. The electrical wire in this case is an Axon , or simply, the Nerve Fibre's. They allow signals to travel between your PNS and CNS (see quick fact on your nervous system). Demyelination is the name for damage to the Myelin. Now it is all a little more complicated than that, but this just gives you a quick way to visualise it. The course of CIDP varies widely among individuals. Some may have a bout of CIDP followed by spontaneous recovery, while others may have many bouts with partial recovery in between relapses. The disease is a treatable cause of acquired neuropathy and initiation of early treatment to prevent loss of nerve Axons is recommended. However, some individuals are left with some residual numbness or weakness, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease. What are the Symptoms of CIDP? Symptoms of CIDP usually develop slowly starting in the feet and legs before progressing to other parts of the body. The symptoms experienced vary considerably between patients and may be vague and confusing to both the patient and the doctor. Subjective symptoms such as fatigue and sensory disturbance are difficult to communicate. These symptoms may remain mild and result in only minor disruption of the patent’s normal life. Alternatively, they may become progressive and gradually worse over a period of several weeks, months or even years — sometimes but very rarely, to the extent that the patient is bed bound with profound weakness of the arms. Look for: numbness pins and needles muscle weakness fatigue loss of deep tendon reflexes Acute Onset CIDP (A-CIDP) Due to similarity in the early stages up to 16% of patients will be misdiagnosed with GBS (AIDP), meaning patients may not receive the best treatment for their condition or understand the long-term outcomes. Patients with A-CIDP are less likely to have autonomic nervous system involvement, facial weakness, a preceding infectious illness, or the need for mechanical ventilation. Around 8%-16% of GBS patients may relapse shortly after improvement or stabilization following initial immunological therapy. This is an important clinical issue because maintenance treatment is often required in CIDP. The diagnosis of A-CIDP should be considered when the condition of a patient with GBS deteriorates after nine weeks from onset, or when deterioration occurs three times or more. What is CIDP? Symptoms of CIDP A-CIDP What Causes CIDP and How is it Diagnosed? Although sometimes a trigger is apparent, and in contrast to GBS, most patients with CIDP cannot identify a preceding viral or bacterial infection. GBS normally progresses over 2-4 weeks, then plateaus, improves over several months and does not usually recur. CIDP has ongoing symptoms for over 8 weeks and usually does not improve unless ongoing treatment is given. How is CIDP Diagnosed? CIDP can be difficult to diagnose as there is no single, conclusive diagnostic test for it. The symptoms are often vague and can be produced by a number of different conditions. Therefore, a long period of time may elapse before a diagnosis of CIDP is made. A diagnosis of CIDP requires the following: Weakness of at least two limbs Complete or partial loss of tendon reflexes Progression or relapse eight weeks or more after initial disease onset Evidence of myelin damage in the peripheral nerves from nerve conduction studies A diagnosis of CIDP is usually made on clinical grounds but with evidence from: Nerve conduction studies Lumbar puncture MRI scan Nerve biopsy Ruling out other diseases that can cause demyelinating neuropathy Family history to completely rule out an inherited neuropathy Contact with possible toxins or drugs that could cause neuropathy Other conditions – diabetes, alcohol dependency, arthritis or hepatitis Nerve Test (EMG, neurophysiology) To measure how your nerves are working, a specialist clinical neurophysiologist usually does these two tests at the same time. nerve conduction studies (NCS) – mild electric shocks are given through the skin to activate the nerves and measure the signals travelling along your arms and legs. electromyogram (EMG) – tiny needles are inserted into several muscles to record their electrical activity. This can show if there is damage to the axons. In people with GBS or CIDP, these tests will usually show that signals are not travelling along the nerves properly. Lumbar Puncture A lumbar puncture is a procedure to remove some fluid from around the spinal cord (the nerves running up the spine), known as cerebro-spinal fluid (CSF). It involves lying on one side and having a needle inserted into the base of the spine under local anaesthetic. The sample of fluid will be checked for signs of problems that can cause similar symptoms such as an infection. Occasionally the diagnosis can be delayed for a few days while they are checking the results, and your doctor may start the treatment just to be on the safe side. Treatment for CIDP & Hospital Advice The treatments with clinically proven efficacy in CIDP are immunoglobulin, steroids, and plasma exchange, all of which have been shown to be superior to placebo in clinical trials. In other studies, they have been shown to be equivalent to one another in efficacy: between 50 and 80% of patients respond to each of the treatments. Failure to respond to one treatment does not mean that the other treatments won’t work either (unless the diagnosis if wrong). 15% of patients do not respond to any of the three treatments. Sometimes it may be necessary for someone diagnosed with CIDP to enter hospital for a longer stay while awaiting initial treatment/being treated. Not everyone with CIDP will require a stay in hospital, but if CIDP comes on very rapidly, presenting more like GBS, it may be necessary to be admitted to ICU for a time. This won’t apply to them majority of people diagnosed with CIDP. Intravenous Immunoglobulin Plasma Exchange (Plasmapheresis) Corticosteroids Is there a Cure? Hospital ICU Support and Rehabilitation General Prognosis What Family & Friends can do to Help Communication Mental Stimulation Financial Worries Comfort Coming off the Ventilator Stay Positive Intravenous Immunoglobulin The most commonly used treatment, particularly for motor dominant CIDP, is intravenous immunoglobulin (IVIg). Immunoglobulin is made from donated blood that contains healthy antibodies which can help stop the harmful antibodies damaging your nerves. If it works there will be a quick response in a matter of weeks, with improvement in strength and function. Some patients (15-30%) only need a single course. IVIg is given in hospital and if it needs to be given long term by regular infusion typically every 6 weeks. This can have an impact on the patient’s work, travel plans, or ability to look after family members, as their infusions need to be fitted around these factors. In some parts of the country it is possible to receive subcutaneous immunoglobulin (also known as SCIg or SubCut) at home which is more convenient for patients. With SCIg, immunoglobulin is delivered by a needle into the fatty tissues under the skin, where it enters the circulation slowly over a few days. There isn’t much room under the skin, so the dose of immunoglobulin given is smaller than with IVIg. For this reason, SCIg is usually given every week. Nearly everybody on SCIg learns how to have treatment at home, with each session lasting up to about two hours. As with all treatments, side effects can occur with IVIg, although usually these are minimal and do not require the treatment to be stopped. It is helpful if you drink plenty of fluid whilst you are receiving IVIg. Transient side effects, which often respond to changes in the rate of administration of the infusion, include headache and low blood pressure and occasionally, a rash can develop. Severe complications from IVIg use are very rare. IVIg thickens the blood slightly so particular consideration of its use is given to patients with kidney failure, previous heart disease, stroke or blood clots. Plasma Exchange (Plasmapheresis) Plasma exchange, also called plasmapheresis, is sometimes used instead of IVIg. This involves being attached to a machine that removes blood from a vein and filters out the harmful antibodies that are attacking your Plasma exchange involves having the patient attached to a machine to remove some of their blood and replace with other blood product (eg human albumin), over 5 days. PE should be considered in preference to IVIg in cases of non-motor dominant CIDP. Corticosteroids Corticosteroids should also be considered in preference to IVIg in cases of non-motor dominant CIDP. Corticosteroids are easy to administer either as daily or alternate daily treatments, or monthly oral or intravenous regimes. In older patients, there are often competing medical conditions which mean that they need to be used with caution or avoided altogether e.g. if a patient has poorly controlled diabetes or osteoporosis, or if they have recurrent chest infections and immunosuppression might put them at risk of overwhelming infection. A younger patient may have fewer comorbidities but would also potentially be facing longer term treatment. If a patient needs very frequent IVIg infusions then a neurologist might consider adding in a steroid or another immunosuppressant agent, and if IVIg does not offer clear benefits, then steroids are the obvious next treatment option. There is a difference in cost between the treatment options, with both IVIg and plasma exchange costing thousands of pounds per course whilst steroids are relatively cheap, but this is not a deciding factor in which treatment is provided. Is there a Cure? It depends how you define ‘cure’, but in CIDP literature this has been defined as ‘remission of over 5 years off treatment’, which has been reported in about 25% of patients treated with steroids for less than one year. Neurologists would more usually use the term ‘remission’ in CIDP (i.e. stability without treatment). Shorter term remission is more common than ‘cure’: there is evidence from studies that up to 40% of patients with CIDP may be in remission after one year of treatment with either steroids or IVIg. It is for this reason that it is advised that the need for treatment is reviewed on an annual basis if patients are no longer showing any or little fluctuation in their clinical symptoms. Although many people remain free of symptoms following remission, there is no guarantee that there will be no further relapse in the future. 15% of patients do not respond to any of the three treatments. Hospital If you do require a stay in hospital, you’ll be closely monitored to check for any problems with your lungs, heart or other body functions. You’ll also be given treatment to relieve your symptoms and reduce the risk of further problems. This may include: A ventilator if you’re having difficulty breathing A feeding tube if you have swallowing problems Painkillers if you’re in pain Being gently moved around on a regular basis to avoid bed sores and keep your joints healthy A thin tube called a catheter in your urethra (the tube that carries urine out of the body) if you have difficulty peeing Laxatives if you have constipation Medicine and/or special leg stockings to prevent blood clots Once you start to improve, you may also need extra support to aid your recovery. Depending on the severity of symptoms, and how well they respond to treatment, you may need help with everyday tasks, your home may need adaptations, or you may need a care package in place. Support and Rehabilitation If you do need time in hospital, you may require some form of rehabilitation before returning home, to help you regain strength, dexterity and mobility. This could be within a rehabilitation unit in the hospital, or you may be transferred to a specialist rehab unit elsewhere. You may also be offered psychological support, as a potentially life-changing illness such as CIDP or another chronic inflammatory neuropathy can also severely impact your mental wellbeing. General Prognosis Treatment of CIDP is usually very effective with about 80% of new cases having a dramatic response to therapy. Although some patients go into a long-term remission after a short course of treatment, many require long term treatment of one form or another. Drug treatments are generally thought to work by suppressing the autoimmune response, which in turn reduces the disabling symptoms of the disease. What Family & Friends Can Do To Help (WFFCDTH) If someone is hospitalised, especially in ICU, here is how you can help. WFFCDTH | Communication Understand as much as you can about this condition. If you are the person visiting most frequently, introduce yourself to the doctor in charge of the case and don’t be afraid to ask questions. Some doctors are better than others at explaining things, so let them know if you don’t understand. Get to know the regular nursing staff and ask for a daily update on progress. Physiotherapy can start while the patient is still paralysed. Get to know the physio and keep yourself updated on procedure and progress. They can tell you how you can help with exercises between physio sessions. Talk to the speech therapist about communication aids. If facial muscles aren’t paralysed, then lip reading could help. Some people retain finger movement and can write letters in the air or on the palm of the hand. A common method of communication with a patient whose movements are restricted to the eyes and eyelids, is to use a question and answer technique with the patient answering with one blink for ‘yes’ and two for ‘no’. Pointing to the letters on an alphabet board and asking ‘Is it on this line? Is this the letter?’, will help. If the patient is strong enough, they may be able to point at an alphabet board with a finger or pointer attached to a headband. A hospital communication book contains lots of words and images useful in a hospital setting and can pre-empt many questions or comments a ventilated patient is likely to make. Inflammatory Neuropathies UK will send you a free copy on request, that you can leave at the bedside for staff and visitors to use. Another useful tool is an app developed by David Muir, who was ventilated due to muscular dystrophy and became non-verbal as a result. The app is called Passy Muir Trachtools and is free to download in your app store for Apple and android devices. It has several pre-recorded phrases, and allows you to record your own customized words and messages. When you find a communication method that works, make sure you share this with staff and other visitors so they can adopt the same practice. WFFCDTH | Mental Stimulation Remember they are socially isolated and will need to be stimulated. Tell them what day it is and talk about what is happening in the outside world. Read extracts from the news and encourage friends and family to send cards and texts about what they are up to. Remember to include them in all conversations, even if they can’t respond verbally. Make use of your tech! Read to them or offer to play an audio book on their smartphone or tablet. Download films, favourite TV shows and music onto their device and watch or listen together if you can, with one earbud each. WFFCDTH | Financial Worries Financial concerns may be causing anxiety, especially if the patient is the main wage-earner. Get in touch with the Social Worker at the hospital who will advise on benefits. Alternatively, Citizens’ Advice offers free expert advice which you access online, or by phoning your local office. Stay in regular contact with employers and make sure you understand the absence and returning to work processes. There is more information about returning to work later in the booklet. Inflammatory Neuropathies UK may be able to help through our Personal Grants Scheme with travel costs for frequent journeys visiting a family member in hospital. WFFCDTH | Comfort The little things you can do will mean a lot. Do they need a hair wash or a shave? Do nails need manicuring? Can you help by massaging their hands or feet? Eating and drinking while you’re visiting might have a negative impact, if they are unable to swallow anything, so make sure you have something before you arrive. Some patients have pain in the acute stage, others as recovery kicks in, and some have no pain at all. Try to understand what pain they have, if any, and the frequency and type of medication being given to alleviate it. CIDP patients may tire easily, may be on sedative drugs and may nap quite frequently. They might not want visitors over and above one or two close family members, especially in the early stages following diagnosis and the start of recovery. At the end of your visit, make sure you leave them in the best possible frame of mind. Turn off any device that might cause irritation or disturbance and make sure they have what they need or can attract attention if required. WFFCDTH | Coming off the Ventilator As things improve, they will be taken off the ventilator, often starting with just a few minutes and building up gradually. Patients can get quite panicky at the beginning of this procedure as they have become reliant on the ventilator and might not believe that they can breathe again without it. Reassure them that their natural ability to breathe is returning and that this is the start of getting well. Once off the ventilator, it is likely that they will soon be transferred to a general ward for a time before moving into a rehab unit or being discharged home. Moving out of ICU, where patients are monitored continuously, can be stressful in itself, but it’s all part of recovery, and no one will be moved until the medical team is satisfied that they are ready. WFFCDTH | Stay Positive Your role is to offer love, comfort and reassurance during this difficult period. Try to remain calm and positive and give lots of encouragement on progress. Keep yourself well informed by the medical staff. Writing a few lines each day in a journal will help you keep a perspective on progress. You can share this over the coming weeks to show how far they’ve come since those early days. For close family, this period of the illness can be an exhausting time of stress, uncertainty and disruption, as you struggle to maintain other commitments alongside frequent hospital visits, so don’t forget to look after yourself and stay well. If it is difficult for you to visit as frequently as you would like, we might be able to help you keep in touch with a smart tablet. Contact Inflammatory Neuropathies UK for further details. IG Plasma Corticosteroids Cure FriendsFamily Hospital My child has been diagnosed with CIDP My Child has been Diagnosed with Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP), what do I do? Although more common in adults, CIDP can affect anyone of any age. It is distressing for any parent to see their child debilitated by illness, and we hope that knowing a little bit about what to expect may help, especially in the early stages following diagnosis. Don’t forget your child needs to be told what is happening and will be reassured by familiar faces and voices. If you would like to talk to another parent of a child affected by CIDP, please contact Inflammatory Neuropathies UK, and we will arrange contact with one of our support volunteers. The following information has been adapted from TheSchoolRun : an online resource for parents of children at primary school More detailed information is published online by Contact a Family. How is Your Child’s Condition Managed? What is Paediatric Intensive Care? Things You Can Do To Help Going Home Back to School BTS Catching Up With Work BTS Fitting In BTS Individual Healthcare Plan How is your Child's Condition Managed? Diagnosis, treatment and recovery will follow a similar path for children as for adults. Paediatric services tend to be very self-contained, and you will have access to support that you would not experience in an adult setting. The following information is specific to differences between adult and paediatric services. It is important your child is treated in a centre familiar with CIDP and with intensive care facilities should they be required, so they may be moved to a hospital you do not routinely use. Most of your child’s care will be ‘supportive’ for breathing, feeding, bowel or bladder functions. Physiotherapy is needed to ensure good joint mobility and to keep the chest clear. People likely to be involved in your child’s care: You, your child and your family Paediatric Nurses and Nurse Practitioners, Doctors and Neurologists Paediatric Intensive Care Nurses and Doctors Neurophysiologist, who does the nerve conduction study Physiotherapists, to help with movement and breathing Speech Therapist, to help with feeding and communication Occupational Therapist, to help maximise recovery Clinical Psychologist Other staff you may meet could include Dieticians, Health Care Assistants, Family Liaison Nurses, Play Specialists, Chaplains and Interpreters. What is Paediatric Intensive Care? A small amount of children with CIDP will initially become so weak that they cannot breathe without the support of a ventilator. This may require a stay in Paediatric Intensive Care, it's similar to adult Intensive Care, but the staff (many of whom are listed above) specialise in working with young people. Understandably this can be a frightening situation for a child who is still fully aware of everything going on around him or her. Parents and carers must provide the child with all the positive support needed to avoid unnecessary trauma. Things You Can Do To Help Even if they can’t respond verbally, your child will be conscious (unless placed in an induced coma for a time to reduce stress and anxiety) and can hear what is being said. Talk about things that matter to your child (a pet, the football results, family events, messages from friends, etc). Bring a favourite soft toy for them to cuddle. Your child may become extremely frustrated especially if he or she cannot speak. Try to work out ways of communicating, such as picture cards that they can respond to by touch, blinking or pointing with their eyes or pointer on a headband. Ask the paediatric team for support in communicating with your child if they are non-verbal. Going Home There are ways of helping children to cope and adjust to what is happening to them. Doctors can prescribe medication to counter pain. Rest, relaxation, massage and physiotherapy are all helpful. Occupational therapists will discuss the suitability of the home environment and tell you how to access any specialised equipment that might be needed. Hydrotherapy and swimming can be very beneficial, as the water is weight-bearing allowing freer movement. Consider going for a family bike ride once your child is strong enough, and even look at an activity such as horse-riding, as this can help with balance as well as the psychological benefits associated with being around animals (contact ‘Riding for the Disabled’, https://www.rda.org.uk/ ). Exercise is much easier when children are engaged, so it helps a lot if it is something fun and enjoyable. Since children are usually very active and move around without thinking, observing what they do naturally is a good indicator of their capabilities. Your child may feel the cold and get tired more easily, or they may lose their appetite or complain of things tasting different. The trauma of GBS may also have an effect on their mood or behaviour. They may become frustrated, angry and upset at not being able to do everything that their friends can, and that they could do before. All of this is normal. It is important to listen to them, understand what they are feeling, and try to find things that will help. Be patient. These problems are temporary and will improve with time, but talk to your GP if you are concerned and feel further support is needed. Back to School Thousands of children live with health issues that involve long periods of absence from school. At some stage, these children will face the unenviable task of going back to school and reintegrating into their former class and its usual daily routines. Catching up with work and friendships can often be difficult, but a good school will do all it can to ease your child’s passage back into school life. Returning to School: Catching Up With Work When your child is ready to return to school, the thought of catching up on weeks of missed work can be daunting. But, says Lesley Black, special educational needs (SEN) advisor at the charity Contact a Family, ‘no school will want to overwhelm a child who has been unwell or dealing with difficult circumstances by expecting them to do extra homework or catch up on work during playtimes.’ Schools may prioritise catching up with work in maths and English – the core subjects – over other subjects. It’s quite common for schools to have small groups of children who need support with numeracy or literacy, and children who’ve been away from school will often slot into one of these. They may be given extra one-to-one help by a teaching assistant (TA) to help them catch up. If you want to give your child a boost at home, speak to their teacher about how you can best help, such as games-based learning activities online that consolidate maths and English skills, or practical things you can do like reading aloud and cooking together. However, be aware that if your child has been ill they might find the school day very tiring, and may not be up to doing much homework. Returning to School: Fitting In Despite the fact that schools are under increasing pressure to ensure children achieve, your child’s school is likely to be far more concerned about their wellbeing as they return to school. Your school should help your child to keep in touch with their classmates while they’re absent, for example through visits, emails, letters or video calls. They also have a duty to help your child reintegrate once they’re well enough for school. Your child may feel awkward if they’re bombarded with questions about why they’ve been away. Sometimes, they’re so reluctant to draw attention to themselves that they put up with discomfort or distress rather than asking a teacher for help. Some children, however, are happier with everything out in the open and even like to stand up in front of the class to explain what’s been happening. If your child has a specialist nurse or a social worker, they may be happy to visit the class, either with or without your child, to answer their classmates’ questions. ‘It’s important that schools are sensitive about your child’s needs when they’re considering what information to share with their classmates and the wider school community, and that they make sure your child has someone they can ask for help,’ Lesley says. ‘This could be a school counsellor or the special educational needs co-ordinator (SENCO) rather than their class teacher.’ Returning to School: The Individual Healthcare Plan A key part of your child’s return to school after illness may be the creation of an Individual Healthcare Plan . This is a formal document that sets out things like: What their condition is. What medication they take. Who, in the school community, can administer their medication. What to do in an emergency. Arrangements that need to be made to enable your child to attend school, such as a quiet rest area . ‘You and your child should be central in drawing up the individual healthcare plan,’ says Lesley. Other people involved in your child’s care may also be involved, such as their GP, paediatrician or specialist nurse. The plan will identify if anyone needs to be given special training to administer medication or otherwise help care for your child at school. If so, someone from your child’s medical team is likely to arrange this. The plan should be reviewed regularly, and at least once a year. Depending on the level of recovery or any residual disability, it may be necessary for your child to return to school in a wheelchair, and school facilities should be checked to make they are suitable for your child’s needs. A welfare officer from the local education authority (LEA) can visit to arrange adaptations, and can sometimes provide equipment for use in schools. Like any other institution, the ability of the school to cope depends on the willingness of those involved, as much as the building’s design and facilities. Before your child returns to school, arrange a consultation with headteacher and SENCO to explain what if any limitations they have. How is your Child's Condition Managed What is Paediatric IC Things You Can Do To Help - Child Child Going Home Back to School CIDP Advice for Carers Hospital discharge can bring mixed emotions. Of course you’re glad to have your family member home, but it is quite normal to feel a bit daunted by what lies ahead, especially if you are now the main carer. On this page we have some practical suggestion that can help you in this new role, and some help contact details and/or resources you may wish to access. Quick Fact: Informal/Unpaid Carer The Department of Health and Social Care has described an informal/unpaid carer as: “… someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction” Ask for a needs assessment for the person you’re caring for You need this before the council can recommend services such as equipment, home adaptations, help from a paid carer, etc. Get a carer's assessment This can be requested at the same time as a needs assessment, via social services at your local council. Don’t be afraid to ask for help Ask family and friends (shopping, respite, etc), and contact carers’ organisations or Citizens Advice for benefits advice and other support. Look after yourself Eat a healthy diet, maintain a regular sleep pattern and make time for exercise, preferably in the fresh air or at your local gym or pool, away from the care setting. Remember to rest Put some activities on hold. Take some time for yourself by arranging respite care from a friend or relative, or through social services. Recognise limitations Both those of the person you’re caring for and your own. Let them try to do things for themselves if they are able, but bear in mind their safety and yours. Look after your mental health Talk to each other about your experiences and frustrations during illness and recovery. Talk to your GP if either of you is struggling. Be mindful of risks Be aware of temperature (cooker, iron, hot bath water, hot drinks), risk of falls due to poor balance, and dropping or spilling things due to weakness. Diet and exercise If appetite and taste are affected, ask about vitamin supplements to help maintain dietary needs. Ask the community physio about exercises to do between visits. Don't lose sight of your relationship Whatever your relationship is to the person you’re caring for, make time for it. Do things together that you both enjoy and that feel ‘normal’. Get in touch with Inflammatory Neuropathies UK We provide information and support, organise peer support via phone or video link, virtual group chats, and run an active and supportive Facebook group. Hospital discharge can bring mixed emotions. Of course you’re glad to have your family member home, but it is quite normal to feel a bit daunted by what lies ahead, especially if you are now the main carer. On this page we have some practical suggestion that can help you in this new role, and some help contact details and/or resources you may wish to access. Quick Fact: Informal/Unpaid Carer The Department of Health and Social Care has described an informal/unpaid carer as: “… someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction” Other sources of support Looking after someone you love doesn’t have to mean struggling alone. There are organisations out there who offer advice and practical support to carers, so reach out and see what help is available to you. NHS advice Carers UK Carers Scotland Carers Wales Carers Northern Ireland Family Carers Ireland Carers Trust Help for young carers Citizens Advice UK Citizens Information RoI Find your local social services England Scotland Wales Northern Ireland Republic of Ireland Mental Health, Well-Being, and Work following CIDP diagnosis This section will provide useful links and sources to help support your mental health during CIDP. If you’re a carer or have experienced a loved one going through an illness it can also be a traumatic time, and these links may also help you. We also discuss getting back to work and how to communicate with your employer. Click one of the headers below to access the information directly: Mental Health & Wellbeing Sexual Relationships Getting Back To Work Back To Work: After a Long Absence Back To Work: Making Reasonable Adjustments Back To Work: Phased Return Back To Work: Pay During A Phased Return To Work Mental Health & Wellbeing With all the changes in your health it is not uncommon to feel anxious or angry, and this can even be helpful to a degree in providing the mental and physical energy that is needed to anticipate and tackle problems. An acute stress reaction is recognised as being a normal part of the process of adjusting to a life change, and it can often help to talk things through with a partner or close friend. However, please seek advice and help from your GP if you are finding it difficult to cope or to sleep, or if you are feeling overwhelmed emotionally. The impact of being severely affected by a sudden, frightening and potentially life-changing condition such as CIDP can leave people with symptoms of PTSD (post-traumatic stress disorder). It can develop immediately, or many months or even years after a traumatic event. If you are concerned about low mood, irritability, panic attacks, anxiety, flashbacks, physical sensations such as trembling or sweating, poor concentration or sleeping problems, please talk to your GP about getting some counselling. We may be able to provide access to counselling - please click here for more Some other sources of support are shown below. 5 steps to mental wellbeing Mindfulness Post-Traumatic Stress Disorder Mental health and wellbeing MIND Young Minds Sexual Relationships CIDP and other chronic neuropathies can bring on problems in any relationship, and sexual relationships are not excluded. Dealing with a long-term illness or disability can put a great strain on a relationship, particularly when one partner is partially or totally dependent on the other. As well as coming to terms with a physical disability, the emotional upheaval can interfere with a couple’s sex life and this can be difficult to talk about. This can mean that the once close, intimate relationship can become distant and stressful for both partners. Help is available so speak to your GP or a relationship counsellor. Relate https://www.relate.org.uk/ Getting Back To Work When someone is ready to return to work after an absence, the employer should have a procedure they follow, or an Occupational Health service. You can check your workplace’s absence policy for this. Your workplace might have a policy for meeting with employees after absences. Back To Work: After a Long Absence If there’s been a long absence or the employee has an ongoing health condition, it’s a good idea for the employer and employee to meet and: Make sure the employee is ready to return to work. Talk about any work updates that happened while they were off. Look at any recommendations from the employee’s doctor. See if they need any support. If the employee has a disability, see if changes are needed in the workplace to remove or reduce any disadvantages (‘reasonable adjustments’). Consider a referral to a medical service such as occupational health. Discuss an employee assistance programme (EAP) if it’s available. Agree on a plan that suits you both, for example a phased return to work. Back To Work: Making Reasonable Adjustments If an employee has a disability, by law their employer must consider making ‘reasonable adjustments’ if needed to help them return to work. Reasonable adjustments could include making changes to the employee’s: Workstation or working equipment. Working hours. Duties or tasks. For the best course of action, the employer should take advice from: The employee themself. The employee’s doctor. Their Occupational Health adviser. This can help get people back to work quicker prevent any further problems. Back To Work: Phased Return A ‘phased return to work’ is when someone who’s been absent might need to come back to work on: Reduced hours. Lighter duties. Different duties. For example, after a: Long-term illness. Serious injury. Bereavement. The employer or their HR manager and the employee should agree on a plan for how long this will be for. For example, they could agree to review how things are going after a month and then decide to increase the working hours or duties, or they might decide they need to stay reduced for longer. The employer or HR manager should continue to regularly review the employee’s health and wellbeing in the workplace and make new adjustments if necessary. Back To Work: Pay During A Phased Return To Work If the employee returns to their normal duties but on reduced hours, they should get their normal rate of pay for those hours they work. For the time they’re not able to work, they should get sick pay if they’re entitled to it. If the employee is doing lighter duties, it’s up to the employer and employee to agree on a rate of pay. It’s a good idea to make sure this agreement is put in writing. This information is provided by ACAS (the Advisory, Conciliation and Arbitration Service). Further information regarding absence and returning to work is available on the ACAS website: https://www.acas.org.uk/absence-from-work MentalH Sexual Relationships Getting Back to Work After Long Absence Reasonable Adjustments Phased Return Pay Phased Return What happens after CIDP? CIDP - So what happens next? What happens next? That’s a big question for a lot of people after diagnosis and/or leaving hospital. This section covers everything from rehab to hygiene to pain management. To skip to the information directly, just hit a header below: Support and Rehabilitation Financial Help General Prognosis Pregnancy Physiotherapy Hygiene, Cleanliness and Teeth Diet Your Immune System Exercise and Rest Pain Support and Rehabilitation If you do need time in hospital, you may require some form of rehabilitation before returning home, to help you regain strength, dexterity and mobility. This could be within a rehabilitation unit in the hospital, or you may be transferred to a specialist rehab unit elsewhere. You may also be offered psychological support, as a potentially life-changing illness such as CIDP or another chronic inflammatory neuropathy can also severely impact your mental wellbeing. Specialists who might support you through rehab: Physiotherapist: will help you with movement issues, re-building muscle, and learning to walk Occupational Therapist (OT): will identify potential problem areas and work out some solutions Speech and Language Therapist: will help with communication and swallowing problems Counsellor or Psychologist: someone you can discuss your problems with and help you find ways to cope emotionally Financial Help Financial concerns may be causing anxiety, especially if you are the main wage-earner and unable to work. If you are employed, stay in regular contact with employers and make sure you understand the absence and returning to work processes. Inflammatory Neuropathies UK may be able to help with the cost of frequent journeys to visit a family member in hospital. Get in touch and ask about our Personal Grants Scheme . Once you leave hospital, or if you are already receiving treatment as an outpatient, you could be entitled to benefits to help you support yourself and your family. The benefits system is complex and subject to change, but Citizens Advice has up-to-date information on their website, and they can even help you make an application for benefits such as Personal Independence Payment (PIP) or Universal Credit: www.citizensadvice.org.uk Further information on benefits can be found at: www.gov.uk/browse/benefits If adaptations to your home are needed, such as installing a ramp or downstairs bathroom for example, it is worth contacting your local council to see if you are entitled to help via a Disabled Facilities Grant: England and Wales Scotland Northern Ireland Republic of Ireland If you are on a low income, or someone in your household is severely and permanently disabled, you may be entitled to a reduction in Council Tax. Further information is available an Carers UK. General Prognosis Treatment of CIDP is usually very effective with about 80% of new cases having a dramatic response to therapy. Although some patients go into a long-term remission after a short course of treatment, many require long term treatment as described earlier. Pregnancy Neither IVIg nor plasma exchange is contraindicated during pregnancy. However, as plasma exchange requires additional considerations and monitoring, IVIg might be preferred. Physiotherapy If you have difficulty accessing physiotherapy, but feel it would benefit you, or if you find yourself on a lengthy waiting list, please contact the office at Inflammatory Neuropathies UK. Hygiene, Cleanliness and Teeth Personal cleanliness for those who cannot care for themselves fully can be a problem. Many returning home from hospital may have reduced use of their hands, usually temporarily, but sometimes permanently. Many will be unable to wash themselves, brush their hair, use the lavatory, wipe their bottoms, brush their teeth, cut their nails etc. It is important for both hygiene and self-esteem that these matters are attended to by a carer. Through no fault of their own, many people’s teeth are neglected during periods of serious illness. Once you have returned home, arrange an appointment with your dentist as soon as possible. If you have difficulty attending a dental practice, enquire about community dental services. Using an electric toothbrush can be helpful if you have residual weakness in your hands. More advice can be found on the British Society for Disability and Oral Health website . Diet During illness, nutritional needs are at their peak, but it is not unusual for patients to lose their appetites or taste for food. Worry and fear often accompany illness and can also contribute to loss of appetite. Good nutrition can be a powerful ally in the process of recovery, so if you need advice, ask to speak to a nutritionist. If taste has been affected, this will usually improve with time. Plastic utensils can be used if bitter or metallic tastes are experienced whilst eating. Sometimes taste changes can be related to medications, but drugs should not be discontinued without first consulting your GP. Try to eat a healthy, balanced diet and keep consumption of sugary and processed foods, and drinks that are high in caffeine or alcohol to a minimum. There is some excellent advice on nutrition on the NHS website : Your Immune System Although caused by your immune system malfunctioning, CIDP does not weaken or damage your immune system, and having CIDP does not mean that your immune system is compromised, unless you are being treated with steroids. Regular exercise and maintaining a healthy diet and sleep regime will all help during recovery. There is anecdotal evidence, and lots of hype surrounding supplements and alternative remedies, but very few are known to have real benefits. Most people are able to get the vitamins they need from their diet, but if you wish to take dietary supplements, your doctor (rather than Google!) will be able to advise you on anything that may help you during recovery. Exercise and Rest Physiotherapy, occupational therapy (OT) and speech and language therapy play a vital role in maximizing functional ability. Exercise can help to improve your muscle strength and reduce your overall sense of fatigue. It can also aid sleep and support mood through the production of endorphins. Other benefits include helping your heart and lungs remain healthy and making you feel more positive about yourself. However, it may take weeks or even months before you feel some of the benefits, so it is important to pace yourself. You will find lots of exercises online, including seated exercises, or you could ask your GP or physiotherapist about how to start regular exercise and what exercises might be right for you. Visit the NHS website for advice on exercise: https://www.nhs.uk/live-well/exercise/ and also for advice on sleep: https://www.nhs.uk/live-well/sleep-and-tiredness/ Pain Being in pain naturally impacts on mood and the ability to cope with everyday situations. If you are experiencing pain, it is important to talk to your family and friends about this, so that they understand what you are going through and why you might be irritable and difficult to live with at times. Other Sources of Support: Pain Concern https://painconcern.org.uk/ British Pain Society https://www.britishpainsociety.org/ Pain Association Scotland https://painassociation.co.uk/ Welsh Pain Society https://www.welshpainsociety.org.uk/ Pain Relief Foundation https://painrelieffoundation.org.uk/ Pain Relief Ireland https://painreliefireland.ie/ Support and Rehab Financial Help General Prognosis Pregnancy Physio Hygiene Diet Immune Exercise Pain What is the advice on CIDP and vaccinations What is the advice surrounding vaccinations and Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP)? Professor Michael Lunn MA MBBS FRCP PhD, Consultant Neurologist and Professor of Clinical Neurology, National Hospital for Neurology and Neurosurgery, Queen Square, London advises: “One vaccine is not the same as another. The only reason that one advises against flu vaccine in someone with GBS is if they actually had GBS in the 6 week window after a flu vaccine and then only out of an abundance of caution which is not based on any real science. The rate of GBS after flu vaccine in all assessed years after 1976 has been about 1 per million and no study has linked vaccination to recurrence of GBS or CIDP. COVID vaccine is nothing like flu vaccine. Although there have been a small number of people who have developed GBS for the first time following the COVID vaccine, the risk of serious illness and complications from COVID are greater.” Live attenuated vaccines should be avoided by anyone whose immune system is suppressed, due to taking corticosteroids to treat CIDP for example. IN simple terms: Live Attenuated Live attenuated vaccines use a weakened (attenuated ) version of a pathogen (bacteria or virus) to stimulate an immune response without causing illness in healthy individuals. Most people don’t need a flu jab. However, if you are in an at-risk group, or you live or work closely with people for whom flu might be severe or life-threatening, then you should be vaccinated, to protect yourself and others. On vaccinations in general, our Medical Advisory Board advises: DON’T have unnecessary vaccines for travel but DO have all travel vaccines that are recommended for the particular area you are travelling to. DO have all vaccines that are ‘necessary’. This includes the flu vaccine (if you are in an at risk group), MMR, DTP, HIF, COVID-19, etc. There are monitoring programmes ongoing so a link would be picked up if it occurred. COVID-19 is a more serious disease than influenza and more easily caught. Most people with GBS or CIDP should receive any of the COVID-19 vaccines, except perhaps people with a history of severe allergy. Vaccines currently in use are amongst the safest medicines available. However, there is no simple ‘yes or no’ answer, and each person must weigh up the risks of not having a vaccination against the very small possible risk from having it. Having relatively mild side effects such as numbness and tingling is quite common following a vaccination, and is almost certainly nothing to be concerned about. If you have had GBS in the past, or if you have an associated chronic neuropathy such as CIDP, a vaccination might cause a slight ‘flare-up’ of symptoms due to your immune system being stimulated. Most will only last a few days, but if they last longer than this, or if symptoms get worse or start spreading, then I would suggest contacting your GP. Anyone can report side effects of medication or vaccines, regardless of severity, and if you would like to do so, please follow this link: https://coronavirus-yellowcard.mhra.gov.uk/ Other Chronic Inflammatory Neuropathies CIDP sounds like a very focussed ailment, but much like GBS and MMN, there are a host of variants that can cause confusion, in both diagnosis and awareness. Let’s have a look at some of these. Paraproteinaemic Demyelinating Neuropathy (PDN) Multifocal Motor Neuropathy (MMN) or MMN with Conduction Block (MMNCB) MADSAM also known as Lewis-Sumner syndrome Chronic Idiopathic Axonal Neuropathy Sensory Neuropathy POEMS Syndrome Paraproteinaemic Demyelinating Neuropathy (PDN) Some doctors regard the clinical, electrophysiological and pathological features of the demyelinating paraproteinaemic neuropathies and of CIDP as closely similar and almost indistinguishable. Sometimes described as: Chronic Demyelinating Neuropathy associated with a benign paraprotein CIDP associated with paraprotein CIDP with paraproteinaemia Antibody-producing bone marrow cells go out of control and produce large numbers of the same antibody. The antibody (or immunoglobulin) sometimes damages nerve fibres causing a peripheral neuropathy. Some doctors regard the clinical, electrophysiological and pathological features of the demyelinating paraproteinaemic neuropathies and of CIDP as closely similar and almost indistinguishable. These neuropathies are usually late-onset in terms of age and are mixed motor and sensory, although the severity of sensory loss tends to be greater compared with CIDP. There is usually more pain but less severe weakness and impairment. Most patients respond to corticosteroids, cytotoxic drugs, or plasma exchange. Multifocal Motor Neuropathy (MMN) or MMN with Conduction Block (MMNCB) Sometimes thought of as a rare variant of CIDP. However, there are differences that are more prominent than the similarities. MMN patients commonly have asymmetric weakness of the distal (far) muscles, while in CIDP, proximal (near) symmetric weakness is more common. The remitting and relapsing course that may occur in CIDP is uncommon in MMN. Patients with MMN rarely have significant sensory symptoms, unlike CIDP. Increased protein level in the cerebrospinal fluid of MMN patients is rare. Treatment with IVIg is usually effective. MADSAM also known as Lewis-Sumner syndrome Multifocal acquired demyelinating sensory and motor neuropathy is a chronic condition with similarities to multifocal motor neuropathy but with enough differences, especially in treatment, to have acquired its own definition. Some report it to be an asymmetrical variant of CIDP. MMN and MADSAM respond to IVIg. Chronic axonal neuropathies are common, particularly as a result of diabetes or alcoholism. However, the medical literature does report cases of immune-mediated chronic axonal neuropathy though there are suggestions that this is a secondary result of myelin damage that ultimately appears to be the primary cause of the condition. Sub-acute Inflammatory Demyelinating Poly(radiculo)neuropathy (SIDP) GBS is defined when the nadir (worst point) occurs within four weeks of first symptoms, and CIDP is defined when the nadir comes after at least eight weeks. An illness peaking after four weeks but before eight weeks may be called subacute and will be treated as CIDP or GBS depending on which it best resembles. Chronic Idiopathic Axonal Neuropathy If no cause for the peripheral neuropathy can be discovered, doctors call it ‘idiopathic’ that means ‘of its own cause’. This label probably covers a number of different causes which future research may uncover. With rare exceptions, chronic idiopathic axonal neuropathy occurs in older people, only worsens very slowly (and sometimes remains stationary), and does not become disabling. It is most commonly a sensory neuropathy causing numbness, tingling and discomfort in the feet that may gradually spread up the shins. People may become slightly unsteady, and weakness of the ankles may develop. The amount of pain is variable. Some people have very little pain but more weakness. Others have little weakness but more pain. Sensory Neuropathy Also known as sensory ganglionopathy, dorsal root ganglionopathy or sensory ganglionopathy, this is a rare subgroup of peripheral nervous system diseases with specific characteristics, such as the primary and selective destruction of the dorsal root ganglia (DRG) neuron in the spinal cord and the trigeminal ganglia neuron in the skull. It has a typical clinical presentation, with sensory deficits that are not dependent on length and patients often report a lack of coordination of muscle movements. There are several proposed mechanisms for the pathophysiology of the condition. The diagnosis is guided by the presenting symptoms and confirmed with diagnostic tests to differentiate from other related conditions. Treatment of sensory ganglionopathy is often difficult and patients often stabilize but fail to improve significantly. There are reports of improvement in immune-mediated and paraneoplastic sensory ganglionopathy following treatment with intravenous immunoglobulin. Quickly treating the underlying cause, such as the underlying neoplasia, may also be helpful. People that suffer from sensory neuronopathy are more likely to be affected by other autoimmune diseases. A differential diagnosis is important to distinguish sensory neuronopathy from other related conditions, such as sensory and ataxic neuropathy. These conditions may include Sjögren’s Syndrome, autoimmune hepatitis and celiac disease. POEMS Syndrome POEMS is a rare condition caused by the body producing abnormal plasma cells (a type of blood cell which produces antibodies to fight off infections). This blood disorder affects multiple organs in the body. It is named after the five common features of the syndrome described below. P olyneuropathy nerve damage leading to weakness, numbness and pain in the arms and legs O rganomegaly an enlarged spleen and/or liver E ndocrinopathy hormonal problems M -protein or Monoclonal plasma cell disorder an overproduction of abnormal plasma cells which lead to other multi system effects S kin changes darkening to skin, red spots on the body, hair growth Paraprot MMN Madsam CIAN sensory neuropathy POEMS

Newsletters One of the most important things we do as a charity is make sure we’re really connecting with you — our community. Every day, you put your trust in us. You open up about your worries, lean on us for support, share your stories, and generously give to our cause. That means the world to us, and as you're so open with us, it’s only right that we keep you fully in the loop about our activities and actions. With that in mind, we’ve got two newsletters we send out regularly to keep you posted on everything happening in the Inflammatory Neuropathies UK world. First up is our monthly IN brief - a quick, four-page snapshot that keeps you in the know about what we’re working on and what’s coming up. Then there’s our quarterly Lowdown - this is roughly twenty pages packed with updates, personal stories from our incredible supporters, and a real behind-the-scenes look at what’s been going on across the charity. If something’s happening at Inflammatory Neuropathies UK, you’ll hear about it there. You can find an archive of our older Updates and Lowdown's over on our previous GAIN website, and scroll down for the latest from Inflammatory Neuropathies UK. Newsletter Archive (GAIN) Previous editions: IN brief | June 25 | #1 IN brief | July 25 | #2 IN brief | August 25 | #3 IN brief | October 25 | #4 IN brief | November 25 #5 IN brief | January 26 | #6 IN brief | February 26 | #7 INdepth | May 25 | #1 INdepth | September 25 | #2 INdepth | December | #3 Our latest IN brief can be enjoyed below, or downloaded by clicking here

​If you've been diagnosed recently with an Inflammatory Neuropathy, or are living with a historic diagnosis, you may wish to seek out some specialist expertise. You can speak with your GP or consultant about being referred to one of these specialists, or get in touch with a consultant’s secretary directly for further information. Specialist Inflammatory Neuropathies Consultants If you've been diagnosed recently with an Inflammatory Neuropathy, or are living with a historic diagnosis, you may wish to seek out some specialist expertise. This map shows Specialist Inflammatory Neuropathies Consultants across the UK which you may be referred to via your own Neurologist.

IN teract Get involved If you or someone you care about has been impacted by an Inflammatory Neuropathy, it’s natural that you might like to get involved with GAIN’s mission of raising awareness and support. Luckily, there’s all sorts of ways you can contribute your time, skills and experience that will hopefully suit any and all abilities. We’ve split these into a few helpful categories below, so scroll to find out how you can join the team, make kind donations, or get involved in exciting events. Is there something in mind you’d like to do to help but don’t see listed? Just get the office a quick call or email, we’d love to chat. Events We often have free supporter places available in major UK marathons, swims and other events. Claim your space, shirt and our support: Read More Become a Trustee Expertise in accounting, company secretary, HR, charity law or other Board level skills? Learn about becoming a Trustee. Read More Research Not only can your fundraising help us provide emotional support and practical advice, your support can also facilitate cutting edge research. Read More Fundraise We couldn't do what we do without the support of individuals, groups, and organisations. Click here to get invo lved. Read More Membership Registration Help shape our direction, influence our decisions, and guide our priorities. Become a free member, vote, and attend our AGM. Read More Volunteer We're a small but committed team. Each of our volunteers plays an integral role in our support, from peer support to Get Together facilitators. Read More 200 Club 200 Club is an easy way to raise funds for our support of conditions while at the same time offering you the chance to win monthly cash prizes. Read More

IN focus Latest Keep up to date with the charity and the wider world of Inflammatory Neuropathies. Visit our blogs for some easy to understand information on GBS and CIDP. Catch up on real stories from real people, and access an archive of Newsletters. Newsletters Monthly updates and quarterly newsletters - keep up to date with all things Inflammatory Neuropathy. Read More Your Stories One of the most powerful ways for us to spread awareness is via real life stories. Read More Blog About the conditions we support, and the thoughts and views of the Inflammatory Neuropathies UK team Read More

Membership Registration The Members of Inflammatory Neuropathies UK are like shareholders - they help shape our direction, influence our decisions, and guide our priorities. We offer two types of Membership: Voting Members and Non-voting Members. Both are equally valued, but Voting Members play a more active role in the governance of the charity. By becoming a Voting Member, you'll be invited to vote at our Annual General Meeting (AGM) and other key events. In fact, one of the most significant moments in our history - the 2025 transition from GAIN to Inflammatory Neuropathies UK - was made official by our Voting Members. Membership is open to everyone and completely free. However, if you’d like to support our work, you’re also welcome to make a voluntary donation, either as a one-off or a regular gift. If you’re ready to join our community, simply complete the form below. If you have any questions about Membership, feel free to email us at hello@inflammatoryneuropathies.uk or call 01529 469910. We’d love to hear from you! Register or Renew membership

Downloads Factsheets Read More Information Guides Read More Awareness Read More Factsheets We want to provide information that is easy to understand, and accessible for everyone. That is why we have created a series of one page fact sheets. They are designed to give you a quick introduction into GBS, CIDP, MMN, Autoimmune Conditions, and Inflammatory Neuropathies. GBS CIDP MMN Autoimmune Conditions Inflammatory Neuropathies About Us If you want more in depth information then you can explore the detailed descriptions in our Information Hub over on the old GAIN website. Don't worry, a more robust and in-depth Information Hub is on its way here. These factsheets are ideal for sharing with friends and family to help explain conditions, or to act as an introduction to Inflammatory Neuropathies UK and what we do. We would love to hear your feedback on these. Let us know your thoughts by emailling hello@inflammatoryneuropathies.uk Information Guides Guillain-Barré syndrome, CIDP and other associated inflammatory neuropathies can have a devastating effect on those diagnosed and their family and friends, they can also be complex and difficult things to understand. Whether you've been diagnosed with an inflammatory neuropathy, you're supporting a loved one (or you're a carer), or you simply want to learn more about these conditions, we have created these information packs to help explain what is happening. Please feel free to download our information free of charge. (Downloads are currently only in English) GBS Information Book CIDP Information Book Quick Guide Awareness Posters One of the difficult parts of living with an Inflammatory Neuropathy is explaining to your friends, family, colleagues, and other peers what is happening to you. Despite being rare conditions, Inflammatory Neuropathies as a whole impact 1000s of people annually. Yet these conditions remain unknown to many in the general public. Events like the annual May Awareness Month are the perfect time to help educate the public. We have created some handy resources you may like to use on your social media, or download and print. Materials Some of materials include:

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Podcasts Podcasts are a great way to get information, and to link in with the GBS and CIDP Community. We recently launched a new podcast series called IN all honesty, where Chief Executive Rich speaks to people with experience of GBS, CIDP, MMN, or another Inflammatory Neuropathy. It's an honest and open chat, with laughs, tears, and everything in-between. Guests include Carol Hooper (chair of Inflammatory Neuropathies UK), Clive Phillips (living with MMN and cycling 3,200km around France for awareness and fundraising), and Rory Coleman (athlete who has completed over 1,000 marathons, and over 200 since having GBS) Check it out by clicking the Spotify button. Or listen to Touching a Nerve with Rich and Al. Hosted by Rich Collins (Inflammatory Neuropathies UK CEO) and Al Bailey (former professional Rugby player diagnosed with CIDP), Touching a Nerve introduced our community to Lynn Rogers, a neuro science professor and endurance athlete who also happens to have CIDP. The duo also welcomed John Solosy who shared his experience of rowing 3,000 miles across the Atlantic for charity.

Meet with others in the UK with Guillain-Barre/GBS, CIDP, MMN, and other Inflammatory Neuropathies. Online via Zoom, or in person support and conversation. Get Togethers Online Get Togethers Read More Local Get Togethers Read More Online Get Togethers If you want to chat about what you are experiencing with others who are going through similar or the same issues, we host online monthly get togethers. All you need is access to a computer or a phone with an internet connection and with one click you can chat, ask questions, seek support, or simply have a good old moan! These meetings are held over Zoom and are always attended and facilitated by us. You can join as often - or as little - as you want, there is no pressure and no commitment. Currently there are three separate monthly Get Togethers; one for GBS (the 3rd Thursday of each month at 2pm) one for CIDP (the 4th Thursday of each month at 2pm), and a new lunchtime session - IN between bites (the second Tuesday at 12pm). Please note, if you've been diagnosed with a variant of GBS or CIDP, you're very welcome to join us! You may not meet someone with the exact same rare variant you have (though you never who will join us!), but you will meet people who understand the impact an inflammatory neuropathy may have on you. Just join when you feel you need the support - simply click on the Zoom links below and follow the instructions. To join our GBS chat, click here 3rd Thursday at 2pm - 19th Feb | 19th Mar | 16th Apr | 21st May | 18th June To join our CIDP chat, click here 4th Thursday at 2pm - 26th Feb | 26th Mar | 23rd Apr | 28th May | 25th June IN between bites 2nd Tuesday at 12pm - 10th Feb | 10th Mar MMN Awareness Month | The Get Together 24th February 2026 | 7pm If you want to check the date of our next meeting then see above. Of course, if you have any ideas about expanding or changing these, we would love to hear from you. Get in touch on hello@inflammatoryneuropathies.uk or on 01529 469910 . Local Get Togethers As much as friends and family can offer support and a listening ear, sometimes it helps to talk to people who really understand. The conditions we support are rare and, chances are you have never met anyone who is in the same position as you. That's why we run local get togethers; a safe space for members, friends, families, carers and other supporters, to meet and offer each other help and advice. You can share your stories and experiences - and, importantly, know that you are not alone. Essex Our latest group met for the first time in 2025, and have their 2026 dates planned out already. Come along to Christ Church Hall, Perry Street, Billericay, CM12 0NX on the following dates between 11:00 and 12:30. 2026: March 7th May 30th Sept 5th November 28th Lancashire and Cumbria If you live in the North West of England the Lancashire and Cumbria group meets quarterly on a Saturday at 1.30pm in Catterall Village Hall , Garstang Road, Catterall, PR3 1XN . This is our longest standing group with a wealth of knowledge and experience they're ready and willing to share with new and old faces alike. 2026: March 7th June 6th September 5th December 5th Yorkshire If you're in the Yorkshire area, our group is IN transit around the area, aiming to visit as many locations in the district as possible. The last date was the 8th of November in St Mary's Parish Centre, 43 Station Road, Burley in Wharfedale, LS29 7NE . We hope you can join Jon and his touring Get Together soon! Dates for 2026 are TBC We would love to see these vital groups spread across the UK and Ireland and there are plans for more to come soon. If you would like to set up something in your area, please contact us on 01529 469910 , or email hello@inflammatoryneuropathies.uk