This topic makes me a little nervous, although the title implies some level of boldness, so let’s hope that’s the direction in which this is going to go.
Cerebral Palsy in the future, what will it look like?
Selfishly I hope it’s still around in 20, 30, 40, 50, or more years from now.
Because I don’t see the need for a cure.
Living with Cerebral Palsy isn’t a walk in the park by any means but I rarely, as in almost never, wish I didn’t have Cerebral Palsy.
I’m not saying that some cases of CP shouldn’t be prevented if there’s a direct case and effect for it, like an infection that then results in injury that results in a diagnosis of CP.
What I’m saying is I don’t think all Cerebral Palsy should be eradicated.
Cerebral Palsy is a disability not a disease that needs to be treated, unlike something like polio, for example.
I don’t see CP in itself a problem, the comorbidities that can accompany it are a different story, the problem with living with CP is more about faults in the healthcare system rather than the diagnosis itself, from my point of view.
I wish more doctors knew about Cerebral Palsy and were willing to have people with CP as their patients. I want to get the same quality of medical care as my able-bodied peers. I don’t want to keep seeing the glazed over eyes and quizzical faces when I go over my medical history, just because I have the most common motor disability in children.
I would rather curing efforts go towards something like epilepsy, which can improve the lives of many people with and without CP.
I also wish there were more studies on CP past the point of the early teen years. I wish I knew more of how my life could look like 10 or 20 years from now. All this effort goes into the pre-adult years but not what happens after. I’ve said it before, and I’ll say it again. Children with CP grow up and become adults with CP so we need to know what we may be facing in the future.
The lack of treatments for adults is another issue that’s probably too complicated to go into here and now, especially with the way things are progressing in medicine at this point in time.
Plus, eradicating something like CP feels like taking a step towards designer babies in a sense. I’m not sure why I can’t put many words to why I feel that way, but it is something I have thought about.
I hope Cerebral Palsy is still around 20, 30, 40, 50, or more years from now. The one thing I do hope for CP in the future is that we have better education and care by the healthcare system that often leaves us looking for somewhere to go or feeling like there’s no place for us.
I don’t think we need to be fixed but we do need to be treated better than we are now.