Friends With FOP

By Karen On Friday of this week, our family took a trip to the Vancouver Aquarium.  It happened that all four of us had a rare convergence of a day off work, school, etc, so we decided to go.  What does this have to do with my daughter Miranda's Fibrodysplasia Ossificans Progressiva, you may ask?  The answer is: pretty much nothing! Which is a very good thing...  What our family aims for is life in which FOP plays as little a role as possible in our day to day activities.  And, as Miranda grows older and more steady, more responsible for herself, ...

Recently Mississippi State University (MSU) held a disability awareness event.  It was sponsored by the disability awareness group on campus, United Students.  Their president, Trish Rader, has FOP and wanted to simulate how difficult it is to do daily tasks for those with FOP.  Even the mayor had a difficult time with putting on a shirt with his arm restricted. Starkville Daily News

posted by Suzanne On October 15th the "Today" show did a health segment about Joshua Scoble and FOP.  Joshua is a three year old boy in Pennsylvania who was diagnosed with FOP (Fibrodysplasia Ossificans Progressiva).  This is very exciting for the FOP community because the segment brought FOP into the national spotlight once again. Click on the link below to watch the video and to read about Joshua's story. http://today.msnbc.msn.com/id/33324573/ns/today-today_health/

I have started this blog over and over and have not gotten very far.  This gist of this is to say, anyone can get scammed...anyone can be the victim in fraud.  I thought I purchased a private/individual medical policy that would cover the family.  Boy I was wrong. A lawyer from the Office of the Insurance Commissioner confirmed to me today that what I purchased a week and a half ago is indeed a scam.  What I bought was through the National Association of the Self-Employed (NASE).  Their members can purchase medical plans with "low premiums."  I was told, instead of ...

When Miranda was diagnosed with Fibrodysplasia Ossificans Progressiva, one of the earliest things we learned is that it's a very rare disorder.  In fact, FOP affacts about 1 person in 1.6 to 2 million.  That means the chance of any random person having a child with FOP is way, way under 0.01%...  My mind still reels when I reflect that I have a child with such an ultra-rare condition. The people who research FOP, the scientists at the Centre for Research into FOP and Related Disorders (aka the FOP Lab) at UPenn, are aware of about 700 people worldwide with FOP.  By population prevalence in ...

Tomorrow is Thanksgiving Day in Canada.  On the list of things I'm thankful for, my daughter Miranda's Fibrodysplasia Ossificans Progressiva isn't one of them...  HELL no, not thankful for FOP. If I could wave a magic wand and make FOP disappear, I absolutely would do it without hesitation.  But that, of course, is pure fantasy.  The fact is, my beautiful, beloved daughter has FOP, and it's not going away.  Miranda will continue to have flare-ups, and they will continue to gradually freeze her joints and restrict her movement.  It's a bitter pill to swallow. FOP is reality for us - just like the sky is blue and ...

I've noticed an interesting connection between Fibrodysplasia Ossificans Progressiva and butterflies.  It's not a scientific connection, but more of an emotional/cultural affiliation. The first time I saw the butterfly theme associated with FOP was shortly after Miranda's diagnosis.  I Googled "International FOP Association", and up popped the IFOPA's website with a beautiful artistic rendition of a butterfly on the opening screen.  The picture had been painted by Jack Sholund, an artist with FOP.  That picture is no longer found on the IFOPA's website, but a different (and equally delicate and graceful) butterfly adorns the cover of the IFOPA's current and previous versions ...