By Maureen Eye | Patient, mother, and member of the FSH Society
In November of 2016 I underwent Scapula Fusion surgery in Baltimore, MD. During that surgery I had the privilege to donate muscle tissue for FSH research.
The donation itself was relatively simple. The paperwork prior to the surgery was minimal and was 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 asking 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 6 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 as 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 and 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 a child, any child not lose their smile, or not lose 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 was possible. Helping others by donating tissue is a way to find strength in the midst of weakness. It is providing hope to our community.
Visit the FSH Society website for information on joining the FSHD Tissue Donation Registry.
By June Kinoshita | Executive Director and Chief Operating Officer
By June Kinoshita | Executive Director and Chief Operating Officer
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