Living with FOP

Posted by Suzanne - June 23rd, 2008

Alan and I have had the opportunity to talk to two separate families who are also living with FOP.  Alan talked to Sarah Steele and her mother, Marilyn, over the weekend (a link to an article about Sarah is on the “FOP Web Links” page).  He was so inspired after talking with them.  Sarah is 23 years old and has graduated from the University of Washington.  She lives in Redmond which is just down the street from us.  I think Alan would be a better person to blog about his conversation.  However I can attest that he was enlightened after their conversation.

I then decided to make contact with a mother in Vancouver BC whose 3 year old daughter was diagnosed a year ago.  I talked to Karen today and she has a very similar story about her daughter when compared to Erin’s.  Miranda and Erin both had flare-ups in the face and in the back.  Plus they both had these bony nodules on their heads as infants.  Karen has had a year to deal with the emotions that come with a FOP diagnosis, and I must say, she has a great attitude towards it.  It’s reassuring to know that we too will be like that.  Right now I am still dealing with nausea and headaches…can’t have a great attitude when I’m stressed like I am.

We talked about all different issues regarding FOP.  Mainly the treatment…which I have had a difficult time reading through Dr. Kaplan’s “Treatment Guidelines” published on ifopa.org.  My heart sunk to my stomach when Karen said that there are no clinical trials being done right now.  However the FOP lab is working on creating a drug that specifically targets the mutated gene.  Apparently a similar treatment is underway for a form of leukemia that has proven successful.  Regardless I had held on to the thought that once this diagnosis is definite…we would start fighting against this disease.  Now I am sad at the thought that our only hope would be Celebrex which is a drug that stops the formation of new blood cells needed to create new bone.  From what I have heard and read, Celebrex isn’t something a doctor would prescribe to a child.  Well, we don’t have the average three year old so someone ought to be getting out their prescription pad…and soon because we’ll be taking that prescription, thank you!

We also discussed using a helmet.  Sadly, Erin took a nasty fall on the hardwood floors this morning.  It just broke my heart when I realized what had happen.  Now I’m on pins and needles to see if a flare-up happens.  God I hope not.  Karen’s daughter is using a neoprene helmet made by her occupational therapist.  I saw pictures of it and thought that the design was so much better than what is in cataloges and the internet.  I forwarded the pictures on to Kate, Erin’s OT.  Hopefully she can hunt down a manufacturer who does neoprene hand splints who can also fabricate a head “crown” of sorts.

Can I just say that this just totally sucks?  I mean, REALLY , REALLY, R-E-A-L-L-Y sucks.  I don’t wish this on anyone.

On a positive note….Karen, if you are reading, THANK YOU for your openess and kindness.  I really do hope we can get our girls together.  Hopefully they will be two kindred spirits together.

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