People Who Slowly Turn To Bone, Stone Man Disease.

Fibrodysplasia Ossificans Progressivia, or FOP for short is a very rare disabling genetic condition that causes abnormal bone growth in humans. The genetic condition is so rare it only occurs in about 1/2,000,000 people. FOP can cause bone to form in muscles, tendons, ligaments and other connective tissues. This can cause problems by restricting the movement of the body and overtime the bone growth will keep expanding till the patient is basically imprisoned in bone, do to this many patients are accustomed to wheel chairs. These bone growths are caused when the patient has caused any trauma to their body. The disease is also often mistaken as cancer, the earliest symptom to determine if the patient has FOP is to look at the big toes, if they are deformed then the patient will most likely have FOP.

A nonprofit organization called IFOPA founded in 1988 by Jeannie Peeper, a patient diagnosed with FOP, to bring together people with who also suffer from FOP. IFOPA supports research at the University of Pennsylvania School of Medicine at a rate of more than $500,000 annually and is a source of invaluable support and comfort to those who suffer from FOP. IFOPA’s mission is to fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide. The organization  as grown to great lengths offering registry for more languages, teaming up with more countries for FOP researching, and learning how to travel comfortably while having the disease.

IFOPA provides many programs and services to patients, families and the FOP community. IFOPA is still making an impact through research, education, support, and education. While IFOPA is making an impact on giving 500,000  to the center for research in FOP and related Disorders at the university of Pennsylvania each year, IFOPA provides education to the medical community on early signs of FOP. IFOPA also has online support groups which allow individuals living with FOP and/ or their parents to connect with one another in a safe environment. These groups are used to ask questions and get advice, share concerns, provide practical suggestions for everyday life and situations that may arise, and simply be connected to others with FOP. These groups are generally administered by FOP individuals or, in the case of Parents with FOPers, by a parent of a child with FOP. IFOPA also bring together FOP patients with health professionals who specialize in FOP research and care. These gatherings provide a wonderful opportunity for FOP patients to gather in a collaborative forum to discuss FOP research, exchange information and experiences, share coping strategies, and much more.

To get involved with IFOPA people can donate, advocate, volunteer, and fundraise at {}. IFOPA also offers ecard or postcard to the individual you designate on your donation form. Donation envelopes are available for those who want to start some sort of local fundraiser. IFOPA also allows shoppers to “Give While You Shop” which implies that some companies that let you shop online have options to donate to IFOPA. Some of these websites are AmazonSmile, iGive.com, Tobi cares, and Goodsearch and Goodshop. To find out more about IFOPA and FOP, go to {}.

 

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