by MAUREEN EYE Centerport, New York
In November of 2016, I underwent scapula fusion surgery in Baltimore, Maryland. During that surgery I had the privilege to donate muscle tissue for FSHD research.
The donation itself was relatively simple. The paperwork prior to the surgery was minimal and mainly taken care of by the doctor’s office. The procedure itself was included as part of my overall surgery, and did not cause any further pain or loss of mobility.
Several months prior to the surgery, June Kinoshita from the FSH Society reached out to me to ask if I would be interested in donating muscle tissue taken from my surgery. It wasn’t even a question in my mind. Without hesitation I committed to donating muscle.
I was diagnosed with FSHD in 2011. My son Liam, then only six years old, was also symptomatically diagnosed. Since that time I, like everyone else I have spoken to with FSHD, have been on a quest to learn everything I can about the disease and, most importantly, how to treat it, how to slow the symptoms, how to cure it.
As a mother, I have not encountered any obstacle as frustrating and upsetting as bringing my son to doctor after doctor, only to be told there is no treatment―there is no cure. My only choice is to sit idly by, watch and wait for progression, and pray that the wonderful doctors and scientists come up with a treatment before his disease progresses.
This is why I would not even call it a decision to donate; it was simply something I could finally do to be able to contribute to my son’s health. In the past, I have donated money, which I know is of the utmost importance for the continuation of research.
Being able to donate tissue is something completely different. It was finally something positive I could provide from having this disease. The knowledge that perhaps the tissue from my body will help children not lose their smile, or the ability to raise their arms or keep them walking, fills me with such hope and gratitude.
This disease can take away so many physical things, but it can also make us stronger in ways we didn’t know were possible. Helping others by donating tissue is a way to find strength in the midst of weakness. It is providing hope to our community.
TISSUE WANTED: DEAD OR ALIVE!
Apologies for the macabre humor, but there’s no way around this reality. FSH muscular dystrophy is a rare condition, and tissue from patients is the rarest and most precious resource for furthering our understanding of the disease. For some research, the muscle is best obtained from a recently deceased donor. But in other instances (such as growing muscle cells in a test tube), living tissue is required, and can be recovered through a biopsy or from a medically needed procedure such as scapular surgery.
For current research studies that need volunteers for biopsy samples, please visit ”Find a Clinical Study” on our website.