Welcome To Kaitlynn's Place

Kaitlynn was born September 29th, 2004. We have seen neurology specialists from St. Louis to New Orleans since she was born. Unfortunately, we still do not have a definitive diagnosis for Kaitlynn. The best guess her doctors have to offer is mitochondrial disease.

Fibrodysplasia Ossificans Progressiva (FOP)

11:37 PM Posted In , , , , , Edit This 30 Comments »
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Fibrodysplasia ossificans progressiva (FOP) literally means the soft connective tissue turning to bone. That pretty much sums up the disease- tendons, ligaments, muscle etc… being replaced by bone. Now, if you stop to think about the implications of the disease, it is quite terrifying.   For example, take a look at your moveable, bendable, flexible fingers. Now, imagine a bridge of extra bone developing across the joint. This bone would progressively restrict movement…essentially forming a second skeleton that imprisons normally  moveable body parts in bone.


This photo shows a short and malformed great toe, one of the classic physical characteristics of FOP.

FOP is the only disease known to medicine where one normal organ system mutates into another. In other words, there aren’t any other diseases where your brain turns into your liver, you heart turns into your kidneys, you spleen turns into your bladder….etc. FOP not only involves a spontaneous mutation into bone, damage to the body as mild as just getting an immunization can cause an inflammatory response that “flares-up” the bone replacement process.

There are cases of supposed FOP dating back to the 17th century. In 1692, Dr. Guy Patin documented a patient that had classic signs of FOP and in 1736, Dr. John Freke documented a patient with signs of FOP. In the 1800’s, there were medical cases described by attending doctors as “turning to stone.”   Throughout history, there have only been 700 confirmed cases of FOP. So, it is extremely rare, but it is equally extremely debilitating.


One of the most well know cases of FOP is Harry Eastlack. His condition began in 1943 at the age of 10. By the time he was 39, his body had ossified to the point  he was only able to his lips. He died of pneumonia just a few days before his 40th birthday. Harry knew the significance of his body to future hope for others. He donated his body to science in hopes that doctors and scientist could begin to understand FOP and one day find a cure. His skeleton indeed provide much of the insight doctors now have into FOP and is now preserved in history at the Mütter Museum in Philadelphia.  Eastlacks’ body does more than any graph, chart, or article to explain how harsh and cruel this disease truly is. 

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Sadly, there is still no treatment or cure for FOP. The average lifespan for someone with FOP is only 40 years. Activities that could cause a flare-up of bone replacement are avoided. Surgical removal of the extra bone actually makes the condition worse, as the body’s response is to  repair the surgical area with more bone.

Researchers from the University of Pennsylvania finally found the genetic mutation responsible for FOP in  2006. The mutation is in the gene, ACVR1. Now that researchers now what causes FOP, treatment, and even a cure is actually plausible. The FOP research has also led to knowledge that might aid in more common skeletal conditions such as - osteoporosis, arthritis, and ossified heart valves.

Most of the research for FOP is funded by the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), a nonprofit started in 1988 by Jeannie Peeper, who suffers from FOP herself. 




For current cases of FOP:
Whitney Weldon
Joshua Scoble
Ashley Kurpiel
Beth




Leading expert in FOP:
Frederick S. Kaplan


30 comments:

Uma Shankari said...

There is a wealth of information here. Something I had no idea of. I'm bookmarking the page, so I can return to it more leisurely.

jo oliver said...

Thank you Uma. I thought it was quite interesting, but not sure if anyone else would:) Thanks!

Gera @ SweetsFoodsBlog said...

Sad hearing about FOB, hope a genetic cure soon.

Friz said...

Hi there. Thanks for your post on Fibrodysplasia Ossificans Progressiva. You did a very good job with it - except, the acronym is FOP rather than FOB. Unfortunately I know about this disease firsthand, as my daughter, age 5, has FOP.

I sincerely hope you will get a correct diagnosis for your daughter. It's very stressful not knowing what's going on.

Best wishes,
Karen Munro (Vancouver, Canada)

Friz said...

Oops, a bit more I forgot to add - I also do a blog, about my daughter's life with FOP. You can see it at www.friendswithfop.com.

Again, best wishes,
Karen Munro

jo oliver said...

Friz,

Thank you so much for pointing my error out. I can not believe that I used FOB instead of FOP.

I am off to check out your blog now.

jo oliver said...

Friz,

Thank you so much for pointing my error out. I can not believe that I used FOB instead of FOP.

I am off to check out your blog now.

Friz said...

Jo - I see you did check out my blog. I'm glad you like it!

I don't think we do have a subscribe button. I've been doing that blog for well over a year now, and never thought about that issue!! Duh and double duh. I'm going to talk to my friend Suzanne, Erin's mom on the site, about getting that set up.

Looking forward to reading more of your blog, to which I have subscribed.

Karen

Kate Smedley said...

Thanks for sharing this Jo, please keep posting.

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