Nail-patella syndrome is characterized by abnormalities of the nails, knees, elbows, and pelvis. The features of nail-patella syndrome vary in severity between affected individuals, even among members of the same family.
NAIL-PATELLA SYNDROME & Cannabis studies completed
My name is Charles Snyder the 3rd. I have a condition called Nail Patella syndrome. As soon I was able tocomprehend the fact that I had small knee caps that would dislocate when my knee bent and didnt 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 dont have a kneecap there, you have a lot of long term pain. Doesnt matter how old you are, but of course the younger, the pain goes away a lot quicker. So Ive 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 didnt 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 benefitted 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.
After they started giving me a ton of medications in response to my accident I was recovering from. Actually, the accident occurred when I was 22, so within a year I had found a surgeon, an orthopedic surgeon that would perform the surgery. So by the time I had seen the orthopedic surgeon and he got me on medications in response to the actual injury that was received through the accident. But then like I said, it seemed to me once I got on these pharmaceutical medications it made things a heck of a lot worse. Its like yeah, there was some relief here and there, it was so short term and not very effective in the long run. It seemed to me as if, through my experiences, these doctors gave me every thing I needed and then at a certain point, they leave you kind of high and dry so to speak. And its like what are you supposed to do. I was given no proper paperwork on how to deal with any of these symptoms that go along with coming off of pain medications.
I was on at the time of my surgery, 750 mg Vicodin, and stuff of that nature. Which now, from my present knowledge, is really bad especially if you are taking something long term. You want something without all the filler in it and all the extra acetaminophens that are hard on your kidneys. Because one part I didnt mention was Nail Patella Syndrome has inner and outer symptoms. Sometimes you get kidney failure, glaucoma, and cataracts and so its really important with Nail Patella Syndrome, to take a more holistic approach towards your overall perceptions. Its kind of difficult to talk about, its kind of like tip toeing around whenever you speak about it. It is such a multifaceted subject when it comes to relating how the disease works on each individual.
Its like a disorder, a condition. Its not really a disorder/ condition its a missing protein it begins with. That mutates supposedly cause the manifestations associated with Nail Patella Syndrome. But other than that, it is different for every individual but there are general things that can be prevalent in certain families. So they have studied families and now that we know all this information. Its a much easier game for my children that it was for me. I did seem like a game most of the time. But very well worthwhile if my children have a better quality of life. Thank god Charlie, has no clubfoot whatsoever, so he has no surgeries in his near future. And me and Avaya did. So it is a very good feeling to sit here and know he doesnt have to go through that and then if he does have any kind of pain associated with Nail Patella Syndrome, because of our efforts in Michigan, Nail Patella Syndrome is actually a listed condition. So he doesnt have to go through any of the heartache that hopefully as much at least as I had too.