I learned today that today is “Rare Disease Day,” and because I am part of several community orgs for cerebral palsy, I learned that CP and the term rare are connected.
Here’s something I learned today:
Cerebral palsy (CP) is the most common lifelong physical disability, yet many of its root causes – including genetic syndromes, metabolic disorders, certain infections, and perinatal stroke – are classified as “rare.” This leaves many individuals with CP caught between two systems: research and healthcare designed for either common disabilities or rare diseases – but rarely both.
~ Source: Cerebral Palsy Foundation
I read that this morning, and I’ve pondered it all day. My CP was caused by a perinatal stroke, and as a child, I had a seizure disorder of some kind. Two “rare” things.
My treatment / care / services were pretty common and standard. As I’ve grown and advocated for myself and the life that I want to live, I am tapping into newer modalities and avenues of care to improve my quality of life. There is better adaptive tech available to help me live the life I want. I’m blessed that I have the means to access these things.
There are so many others that don’t or can’t access the care to improve their lives and have the quality of life they deserve.
Too many families wait too long for an accurate diagnosis and treatment options.
Too many children lack access to critical early interventions that could change their futures.
Too many adults face a lifetime of medical uncertainty.
~Source: Cerebral Palsy Foundation
I was 6 months old before I had a diagnosis. The therapy and care I received as a child was insufficient. As a young adult, I didn’t know how to advocate for what I needed.
It’s only within the last 15 years that I’ve gotten the surgical interventions I could have had when I was younger. I have embraced the fact that tech and gear can give me access to things I never allowed myself to dream about as a kid. I take advantage of meds and treatments that weren’t available back then. I utilize therapy like never before because movement = freedom.
It doesn’t have to be this way. We need urgent investment in early detection, intervention, and lifelong care — because everyone deserves access to the best possible future.
~Source: Cerebral Palsy Foundation
We can do better. Those of us who reached adulthood with CP or any disability need to use our voices and raise that ceiling for the next generation.
Vote! Get involved in organizations! Tell your story! Show up – for yourself and for the world at large! We deserve to live our best life and share the best version of us with the rest of the world.
Indomitable Bellatrix 