The train is here, and I’m already late for work. Better sprint the short 50 m distance between my front door and the train station – as I am quickly becoming a master at. It’s been raining, and the steps up to the platform are soaking. I’m panting heavily, the conductor’s whistle has been blown, doors beeping, doors closing, almost there–I slip on the last step. Instinctively, I stick out my hands in defense, bounce off the ends of my fingers (imagine seeing your fingers bent 90 degrees, the wrong way), and ricochet into the train carriage, clutching my hand in agony.

My name is Edward. I’m 27 years old, and welcome to my story.

“I think you’ve snapped your extensor tendon,” the GP said calmly on the other side of the room. How would she know better? Three months, an X-ray, and countless Ibuprofen after falling; she is witnessing a patient presenting with a bizarre physiological change with a limp and lifeless middle finger in his right hand. Stranger, is the drooping migrating over several months to the ring finger, almost like I was being forced to count down from five.

With my fall providing a sound conformational bias that I had snapped a tendon in my right hand, I bandaged it up and kept trudging on with my master’s degree with the knowledge of a referral in sight with a leading hand surgeon in Birmingham. An experienced and self-assured man, he was quick to double down on the idea of an MRI of the hand plus a follow-up surgery being able to do the job.

If I had thought that just a year later I’d be told that my tendon was un-scathed, be put through countless EMGs, nerve conduction studies and examinations, battle with the lingering diagnosis of ALS and finally arrive at a diagnosis of MMN – I’d have just laughed. Sure enough, by 2017 I found myself getting IVIg infusions every 4 weeks to try to stabilize this disease.

It’s not often that stories like these end up positive, and I can only express gratitude that I’m able to say that has so far been the case for me. COVID brought an openness in my attitude towards MMN, a more holistic attitude towards my health and wellbeing, and my fortune in being introduced to the GBS|CIDP Foundation.

Since 2020, I’ve become a qualified Sports Nutritionist – helping others across the world with symptom management through my app, Health Haven – as well as meeting countless others with the disease virtually and in person at the Foundation’s Symposiums. I’ve had the chance to become an ambassador for patient advocacy on behalf of the Foundation’s task force, provide input for future research, feature on podcasts, and spread awareness for this disease far and wide. Health Haven is now home to ~2% of the US based MMN community, with hundreds of the world’s vetted and elite health coaches and keen health-seekers collaborating on the platform - along with a recent partnership with Arrive NYC to allow members to drop in for in-person mobility and wellness sessions in Chelsea, Manhattan.

Resources

To download Health Haven, click here.

To learn more about Health Haven, you can visit https://healthhavenapp.com/training-for-medical-conditions/.

If you or your loved one is diagnosed with MMN and would like to learn about the latest research opportunities, you can get in touch with the Know Rare support team here.