John's Story | MMN

John Navarro was recently interviewed by Chris from Inflammatory Neuropathies UK. The article featured in our newsletter and we would like to share that story here. Please enjoy.

"Last year, Rich met John Navarro at a GBS | CIDP Foundation International event, they had a great chat and kept in touch. John, 38, is from Gibraltar and has had a diagnosis of MMN for a year. He spent two and a half years before that searching for answers, and eight years with symptoms. Recently, John made a pop in the press during MMN Awareness Month. He kindly joined Chris via Zoom to share his story.

John Navarro had been living with a foot drop in his left foot. His Doctors chalked this up to two hernias in his lower back, and for six years, despite the foot drop getting progressively worse, John got on with life. Then he started getting the same weakness in his hands.

“Life and daily tasks became much harder as you can imagine. Then it got to the point where I couldn't grab cutlery properly, or grab a toothbrush properly, and so the hospital started pushing a little bit more for a different diagnosis while I started to worry a little bit more.”

He bounced between clinics with no real answer, and soon involved the Minister for Health, Gemma Arias-Vasquez (“there are only around 30,000 people and a very close knit community so it’s easier to do these things!”).

She took a great interest and got involved. He was quickly sent to another clinic a little farther away, but he was used to this, most of the clinics were already in Spain so he was happy travelling.

“I explained what was happening and before he had finished his tests, he said, ‘I know what's going on with you already’. I left that clinic knowing that I had Multifocal Motor Neuropathy, and I've taken it from there. I was lucky to have this person who knew about MMN.”

Now he had an answer, treatment could begin.

“The attention that I’ve had from doctors and the care has been very, very good. And, perhaps because, we are in a smaller community, we haven't had any shortages of immunoglobulin. I have IVIg every four weeks now over two days.”

“I also have a visiting specialist neurologist who flies over from London every six months, but if you have queries they’ll arrange a call. I’ve also got a local neurologist who is very attentive and if I’ve any questions I’ll send him an email. In fact, I emailed him a couple of weeks back and was in the process of WhatsApping my wife to update her when I received a call from him, so that goes to show the care has been second to none”.

Inflammatory Neuropathies UK know all too well how isolating a rare condition can be, and John has one particularly unique distinction. “It was confirmed by my doctor that I am the only patient with MMN in Gibraltar. That Doctor is in London, and even there he’s not even got a handful of MMN patients so it just goes to show how rare it is.”

So how does John access peer support? “I found I was missing a community because you want to talk to people going through the same thing you are, so I started a support group myself with help from a couple of other UK government patients. I advertised it in some international groups, and within the first 24 hours we had about 50 members.

Word of mouth is what keeps it growing and there’s a lot of information and questions in there. Everyone’s sharing stories, and there’s a lot of patient support, which is what we like.” [Find the group on Facebook by searching Multifocal Motor Neuropathy Support UK].

At the start of this article, we mentioned press attention during MMN Awareness Month.

“I’ve been advocating for MMN since my diagnosis. I found the GBS | CIDP Foundation International and thanks to them I’ve been sharing my story online. But, perhaps because Gibraltar is a smaller community, I didn’t feel comfortable at first coming out locally.” Well in February I thought, maybe I could light up the big iconic landmark that we have here in Gibraltar, other than the big rock - Moorish Castle. They light it up to raise awareness for other diseases and recognise certain people who pass away.

So I thought, I’ll speak to the minister again and see if I can get them to light it orange for one evening. However, to do that I knew I’d have to put my story out there on social media and local groups because there’d be no point in having the landmark lit with no context! I got word that they’d accepted my idea so, with 4-5 days to prepare, I shared my story with the local community. It was really well received, overwhelming and emotional sometimes. I spoke on live TV, podcasts, and other media, so it’s been a busy month without expecting it!

As we left John to prepare for his next call, Chris asked if he had any final thoughts on the project, and if he had a message for others experiencing a rare condition like MMN.

“I hope that my actions have not only raised awareness for a moment, but also empower other people with rare conditions to speak out and raise awareness about them.

People may not understand exactly what you're going through medically, but, psychologically we do understand, so don't hesitate to raise awareness for your condition. But, always try to stay positive. No matter how hard it may be and try to just turn the curse into a blessing”

A huge thank you to John for taking the time to share his story with us.