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: 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 didn’t 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 doesn’t 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 doesn’t have to go through any of the heartache that hopefully as much at least as I had too.