Gibraltarian raises awareness of rare neurological condition

Gibraltarian John Navarro, 38, is the only person on the Rock with multi-focal motor neuropathy (MMN) and, one year post diagnosis, he is set on raising awareness both locally and globally of the rare neurological condition.

One act of raising awareness was having the iconic Moorish Castle lit up orange on Tuesday evening last week as part of MMN awareness month.

The married father of three was first diagnosed with MMN in February 2024, after undergoing a series of five electromyography (EMG) studies to measure muscle response.

"On my last EMG, they found a hallmark of MMN that's called conduction block," he explained.

"Apparently, only patients with multi-focal motor neuropathy have this conduction block, so once that was found, we knew what was going on."

The early symptoms were debilitating, with Mr Navarro experiencing paralysis in his arms, hands, legs and feet.

"It started with weakness in my wrists and having trouble holding things up, having trouble holding my arms up and, if it goes untreated, becomes worse and worse and worse and eventually cause paralysis," he said.

The disease’s prevalence is 0.6 in 100,000, he noted.

It took John two and a half years to receive a proper diagnosis, with his leg symptoms present for around eight years before that.

It is sometimes misdiagnosed as Amyotrophic lateral sclerosis (ALS), which the ice bucket challenge raised awareness of, but this was not the case with Mr Navarro.

A procedure called a lumbar puncture was needed to analysis his spinal fluid to rule out ALS and other neurological conditions.

The procedure is so painful he passed out three times. He is thankful never to have to endure that again.

"My hands started being affected about two and a half years before my diagnosis," he recalled.

The disease is also progressive, he stated, so it will continue to evolve as the years go by.

Living with MMN has become a part of his daily life, a daily life that can include severe cramps and nerve pain within his arms and legs.

But with the help of plasma-derived immunoglobulin treatments, he is able to maintain a relatively normal lifestyle.

"Thanks to plasma donors, we have this immunoglobulin medication, and I am able to live a relatively normal life," he said.

"I still have a disability, still have these weakness issues, like I said. My leg is almost partially paralyzed."

The treatment has been a game-changer for Mr Navarro, with noticeable improvements after his first dose.

"The day after that first treatment, I could already straighten my hands," he said, something he had not been able to do previously.

"It works, obviously, like a miracle."

To manage his condition, he relies on his own physiotherapy routine, as well as hyperbaric oxygen therapy, which he finds very beneficial despite the demanding nature of the treatment.

Determined to raise awareness and advocate for others with rare diseases, he approached the Minister for Health, Gemma Arias-Vasquez, about lighting up the Moorish Castle for MMN Awareness Month.

"I thought, as I had spoken to the Minister for Health a number of times regarding my condition and she had been very, very positive about it. I thought ‘I'm going to mention it to her’,” he said.

Within a day, she had come back to him asking him what day he wished for it to be lit up orange.

Since then, he said the response from the community has been overwhelming, with Mr Navarro expressing his gratitude for the support.

"The reception from the community has been overwhelming. To be honest, it's been a little bit emotional sometimes because I didn't expect this reception from everybody," he said.

Mr Navarro has also been working internationally as a volunteer for the GBS/CIDP Foundation International, a foundation that focuses on Guillain-Barré Syndrome, Chronic Inflammatory Demyelinating Polyneuropathy, as well as MMN, in a bid to raise awareness and to tell his story.

Mr Navarro hopes that not only will he raise awareness to his rare condition, but also to other rare conditions that some Rock residents are living with.

In addition, he hopes that by sharing his story it will inspire others and contribute to a future where faster diagnoses and treatments can prevent long-term damage.