Former Soldier’s Rare Condition Sparks Awareness Campaign

Clive Phillips, a former soldier from Birmingham now residing in Hope, New Zealand, was diagnosed with multifocal motor neuropathy (MMN) after experiencing an alarming inability to give a thumbs-up to a colleague. At 50 years old, Clive discovered that he had the hand grip strength of a person in their 90s, prompting a journey of diagnosis and treatment that has inspired him to raise awareness about this rare condition.

Clive, who has always been dedicated to maintaining his fitness through activities like mountaineering, walking, and cycling, began noticing subtle changes in his physical abilities in his late 30s. He recalled struggling with everyday tasks such as lifting bags and buttoning clothing. Initially, these issues seemed minor, but the “tipping point” arrived when he failed to perform a simple thumbs-up gesture at work, leading to his diagnosis in December 2019.

MMN is a rare and incurable neurological condition that causes a gradual loss of motor function. According to data from the National Institutes of Health, it can take an average of more than six years for patients to receive an accurate diagnosis, during which time symptoms are often mistaken for conditions such as motor neurone disease (MND). Clive’s experience was more straightforward than that of many others, as he was diagnosed relatively quickly after consulting various specialists.

Reflecting on the moment he realized something was seriously wrong, Clive shared, “I was walking down the corridor at work and trying to give someone a thumbs-up with my left hand, the most natural action in the world, and I couldn’t do it. I thought, ‘hang on a minute, I can’t do that’, and that was the moment when I realized that this isn’t normal.”

Born in Birmingham, Clive initially pursued a career in geology before enlisting in the Army, where he served in various locations including Iraq and Afghanistan. After transitioning to civilian life, he began working in emergency management and humanitarian roles. His symptoms began to manifest around 2013, culminating in a skiing accident that exacerbated his condition.

The challenges continued as Clive struggled to perform basic tasks. He explained, “The first thing I remember was trying to hold a knife and fork and my hand shaking.” Despite his concerns, Clive pushed these issues aside until the symptoms became more pronounced upon returning to the UK in 2018. By early 2019, the combination of failing to give a thumbs-up and developing foot drop—a condition causing him to trip—led him to seek medical help again.

After a series of tests including nerve conduction studies and MRIs, his diagnosis of MMN was confirmed. Clive began treatment with intravenous immunoglobulin (IVIg) therapy, which is the only FDA-approved treatment for MMN. This therapy involves monthly hospital infusions made from donated human plasma. Clive responded well to the treatment, allowing him to regain some strength and function in his hands.

Christmas Eve in 2019 marked a significant milestone for Clive as he was able to give his wife a thumbs-up once again. This moment of triumph was more than just a personal victory; it fueled his determination to advocate for those affected by MMN. He launched a social enterprise called Making the Most of Now, aimed at improving understanding of the condition and providing a platform for patient voices.

In his efforts to raise awareness, Clive embarked on a series of challenging cycling rides, including a 22-day journey retracing the route taken by the first British Tour de France team. He noted, “There was a time when I thought I might never ride again. I felt like I’d been given a second chance, and I wanted to do something meaningful with it.”

Clive hopes that increased awareness and funding will lead to quicker diagnoses and targeted treatments for MMN. He emphasized the importance of community among patients and researchers, expressing his desire to inspire others facing similar struggles. “I’m incredibly grateful for everything I’ve got,” he stated. “I’d say to others, don’t isolate yourself, connect with people, and be your own advocate.”

To learn more about Clive’s work with Making the Most of Now, visit makingthemostofnow.co.nz.