HELP! My 4-yr. ol cousin just got diagnosed with a extremly rare genetic disease?
dramaqueen101
My cousin is 4 years olld and just got diagnosed with an extreemly rare disease called fibrodysplasia ossificans progressiva otherwise known as FOP. I was wondering if anyone had ever heard of this disease or if any one knew anyone with this disease.
FOP is a disease that turns damaged tissue into bone so if a normal person got a bump it would go away but if he gets hurt it turns into bone which can limit his use of his mucles.he already has limited use of his arms and will eventually have to have a wheel chair and possibly not be able to feed himself or move his jaw.
so if anybody has any usefull information or has any ideas on how to help him. please anwer this question
**best answer gets free 10 pts**
Hello blogger.
I am the mother of a little girl who is also age 4 and also has FOP. You asked the best way to help your cousin – in fact, there are 2 best ways. The first way is for your family to get educated about your cousin’s needs with FOP. An excellent way to do that is to join the International FOP Association, which is based in Florida. The IFOPA has a website at http://www.ifopa.org and it has a wealth of informtion. I’m so sorry about your cousin’s diagnosis, but I hope you and your family will come to know that you’re not alone, and there’s a great community of FOP families out there to help you. In time, you may want to join our FOP Yahoo group, FOP Online (you join through IFOPA).
The second way you can help your cousin is to donate to FOP research. The good news about FOP is that the gene mutation which causes it was discovered a couple of year ago, and researchers led by the wonderful Dr. Fred Kaplan and Dr. Eileen Shore at UPenn are making great strides in working toward an effective treatment for FOP. You can donate directly to UPenn and specify that the money is to go to either the Ian Cali Fund or the Whitney Weldon Fund, or alternatively you can donate through the IFOPA.
Feel free to have a look at the website I run along with another mom of an FOP child.
With my very best wishes,
Karen Munro
i would suggest trying to stop him from getting bumps (captain obvious reporting for duty). that probably doesn’t help. he probably wants a normal life so try and provide that whilst also keeping within the restraints put on him by the disease.
The best advice I can give is don’t let him take blood tests or get hurt. I would keep him in a padded room. But that isn’t practical. My advice is to watch Lorenzo’s Oil. It may be about a whole different disease, but the concept is practically the same. I am sorry, but as of now. This disease is a death sentence. I could be wrong. There is some hope of a cure and a famous case of FOP can be read on Wikipedia. The guy lived from 1933-1973. By the time he died though, the only thing he could move was his lips. There is a hope for a cure in a gene in sharks, but I wouldn’t count on it. Just make the rest of his life comfortable and may he live happily in the time he has under the sun. I am truly sorry.