Ride for a cure! Local columnist shares his struggles with a rare neurological disease that’s getting some much-needed attention.
You probably recognize Dr. Lorenzo Woodson from this very publication, where he writes provocative columns on racial equality and social justice. He’s also the face of CMT for the Hereditary Neuropathy Foundation.
CMT is the most common rare disease you’ve never heard of, affecting 1 out of every 2,500 people worldwide. Unfortunately, it’s also known as an “orphan” disease, which means it hasn’t been “adopted” by the pharmaceutical industry because there’s so little financial incentive to market tests and treatments. But that may be changing.
With the recent prevalence of genetic testing, it seems the number of diagnoses have been increasing dramatically, and researchers are taking a new interest in tackling this disabling disorder. Exciting technologies like gene therapy, nerve regeneration and genome surgery target new treatments that could put CMT behind us soon.
Research isn’t free, though. This year, CMT lucks out with an invite to the prestigious Million Dollar Bike Ride, where teams of cyclists representing various rare diseases ride to raise funds and awareness. Since starting in 2014, the event has raised over $8 million for research grants!
JOIN THE RIDE: Choice of short (18mi), medium (34mi) and long (72mi) routes provide easy, moderate and challenging courses. All start and finish at University of Pennsylvania’s downtown campus. Registration for riders ($80) is open until midnight June 2nd . Walk-ups are welcome on race day ($100). 100% of proceeds go to medical research. milliondollarbikeride.org
To ride with the HNF team, contact email@example.com ($25 to register, must commit to raise $250).
DONATE to Hereditary Neuropathy Foundation directly at hnf-cure.org
I, Lorenzo Woodson, am the face of CMT.
I’m 55 years old, I grew up in Philadelphia, in the foster care system. I remember noticing the first signs of CMT around age five during play, when I realized running and keeping up with my peers was difficult.
Swimming was one of the activities that I did well, and it gave me some leverage of self-confidence. Later as a teenager, cycling provided me with some stamina and strength against CMT’s gradual weakness of “periphery” muscles like my calves, ankles, hands, wrists and forearms. As I reached my 30’s and 40’s, though, exercise was not enough and my muscles began atrophying. Where I had once been able to easily lift 30 – 35 lbs with one hand, now that is extremely difficult.
Standing in line for public activities like concerts or sports events is also a physical strain. So is running, which is nearly impossible to do with the ankle braces I now require to keep me from falling and tripping. While I have been able to complete great levels of academic proficiency and continue scholarship in my trained field, CMT slows my ability to type — a considerable impediment to writing, paperwork, correspondence, etc.
Daily life is often full of frustrating and embarrassing moments. Getting dressed is a series of daunting tasks: buttoning down my shirts, tying my shoes, clipping my fingernails, putting cream in my hair, zipping up my pants and jackets. Opening the door, locking it behind me.
Even just eating! Certain foods can be very difficult. I love hot wings, for instance, but it’s really hard to eat them because the pinching motion between my thumb and forefingers is too weak to get a good grip. I feel self-conscious eating them, too.
As my disease progresses, fine motor skills continue to deteriorate while fatigue and weakness remain a growing concern. Walking long distances, climbing stairs, carrying groceries from the car to the house – these are real challenges now, and I’m concerned for my physical abilities as I age.
Will I always be able to feed myself? Open my own mail and prescription bottles? I’ve always been good at innovating, for instance, a discreet piece of string attached to zippers makes them much easier to use (an idea that came to me after one too many close calls in the bathroom – don’t ask). Hopefully, I’ll continue to figure out ways to adapt to curve balls CMT throws me. One thing CMT doesn’t affect is the brain, at least, not the ability to think. A disease this powerful, though, certainly affects a person’s attitude and self-image.
Growing up limited by CMT, I kept to myself. I didn’t have a whole lot to feel good about in foster care, but I took pride in how I looked, styled and carried myself. As I’ve gradually lost my strength and stamina, I’ve learned to accept and even appreciate how we all need help from other people sometimes.
Vulnerability is the bridge to connection, and with this knowledge I’ve built great relationships that have sustained and inspired me. Still, I hope that in my lifetime we’ll see the last child born with this random, debilitating disease.
Thank you for reading — and please share! We work hard to cover community news and whenever someone shares one of our stories, it’s like a little hug of encouragement that helps to keep us going.