In July, BNS staff writer Patricia Inacio wrote a story discussing why and where children with cerebral palsy need more pain management. The article states that children with CP often have pain that is overlooked by caregivers and therapists. It discusses the importance of assessing the pain level of a child because pain occurs frequently and can be made worse by treatments. Reading this instantly struck a chord with me; I definitely was that child, and at the time I did not have the vocabulary to put into words how I was feeling.
But the study this article was based on focused only on children with severe cerebral palsy and those who were non-ambulatory. While I found the research to be educational and accurate, these 240 children are not enough to get the full picture, and readers could miss out on a wealth of information about everyone on the cerebral palsy spectrum.
I have a “mild” case of cerebral palsy. I walk with a limp and use various assistive devices depending on what I need at the time. While I also have hip and joint pain, like the children in this study, people like me weren’t discussed.
Recently, I was having a conversation with my specialist about what happens to me now. I am an adult aging out of the system meant to care for me. I’m 22 and still seeing my pediatric specialist while she searches for other options for me. I am amazed that resources and information are this scarce for people with disabilities, even for me, someone with a mild case. How can resources be so limited when one in five people today have a disability? Some 15 percent of the world’s population is disabled. That’s more than 1 billion people.
It gets worse. My doctor told me that a lot of her adult patients are homeless. There is such limited research and care for people after their caregivers pass away. More than 40 percent of the homeless population is disabled. This needs to change. But how?
One problem, as you can imagine, is that there simply isn’t enough money coming into the hands of people who do the research or provide care for people with most disabilities. Another problem is that many of the services that aid people with disabilities have long wait times to start receiving services, and then even longer wait times to get the wheels in motion for the person to receive what they need. This is unacceptable.
But the good news is there seem to be ways we can help. I’ve reached out to Paul Gross from the Cerebral Palsy Research Network to both give and receive information. I will write a column next week to update what I found. I am sure there are small resources like this for anyone who is interested in doing a Google search.
Change starts with us — patients — and we need to be the voice for so many who are unheard right now.
Note: Cerebral Palsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.
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