Nail Patella Syndrome
Nail–patella syndrome (NPS) (also known as “HOOD syndrome“) is a genetic disorder that results in small, poorly developed nails and kneecaps, but can also affect many other areas of the body, such as the elbows, chest, and hips.
Here is Charles Snyder III’s story.
Transcript: My name is Charles Snyder the 3rd. I have a condition called Nail Patella syndrome. As soon I was able to comprehend the fact that I had small knee caps that would dislocate when my knee bent and didn’t have thumbnails, I was able to, Id say was about 4 or 5 years old when I started to really realize like if you bump you knee and don’t have a kneecap there, you have a lot of long term pain. Doesn’t matter how old you are, but of course the younger, the pain goes away a lot quicker. So I’ve known from a young age, and I have participated in studies as a result of the surgeries in relation to the Nail Patella syndrome, clubfoot deformity, or clubfoot condition that can manifest as a symptom of Nail Patella syndrome at birth.
My parents were I guess just more or less shocked, not shocked they were just concerned about how this whole thing was going to turn out. The doctors cant promise that I could ever walk, going to have to have this surgery. I can only imagine how my parents felt at the time. I didn’t really run into pain medication issues that were mostly exasperated by an auto accident at the age of 22.
That is where my search for a new medication in response to the negative effects occurring from the opiate based medications.
I had this huge contusion on this arm. They had to fuse the metacarpals in my hand. But before they did that, it was a really painful thing. As a result of using cannabis therapeutically, my health has benefited immensely. Not only the opiate medications tend to keep me, during the winter months, kind of bed ridden. Really the reasons my life has improved are multifaceted. Some of the main areas are my health and diet has increased as the result of my therapeutic use of cannabis.
Because of the research associated with cannabis, and I felt the research was right or else I would not have continued in my advocacy and activism. It has proven to be more and more true as the research continues to come out like this Patients out of time Conference.