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Fibrodysplasia ossificans progressiva, or FOP, is an extremely rare medical condition that affects the musculoskeletal system of the body. A person is born with this painful progressive condition where muscles and tendons turn into bone over time. FOP Awareness Month is here to raise awareness about this condition that, so far, doesn’t have a treatment or a cure.

History of FOP Awareness Month

FOP Awareness Month is sponsored by the FOP Friends organization as well as the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), with the purpose of spreading the word about this condition and building understanding. The event starts on the first of April and runs until the 23rd of the month to coincide with the announcement of the discovery of the ACVR1 gene, which is responsible for FOP, which is also celebrated as FOP Awareness Day. 

While there is no readily available treatment or cure for this condition, early detection of the disease is vital because its progression can be aggravated by any kind of bump, injury, trauma or surgery. That’s why it is so vital for parents and doctors to be aware of the signs of FOP so that they don’t live with it undiagnosed. Since the discovery of the ACVR1 gene in 2006, genetic testing has been a vital part of the diagnosis of this medical condition.

How to Celebrate FOP Awareness Month

Get involved and raise awareness for this medical condition by observing and enjoying FOP Awareness Month. Check out some of these ideas for getting started:

Learn the Signs of FOP

One of the best ways to get involved with FOP Awareness Month is to get more educated about the facts behind this condition. It is important to know that the most common indication for FOP is toes that are shortened and turned in, along with unexplained incidences of swelling. If these symptoms are noted in a child, it is vital to get more informed and have them seen by a medical professional and see if it is necessary to have genetic testing done.

Attend an FOP Awareness Month Event

The FOP Friends organization hosts various events and campaigns in honor of FOP Awareness Month and FOP Awareness Day (April 23). One fun online event that has been running for several years is the Fun Feet 4 FOP. This event raises awareness for the condition by encouraging people to connect together online by sharing photos of their feet in fun socks, silly shoes or even painted! Highlighting the key diagnostic feature of toes, this event is a fun way to build knowledge and spread information about FOP.

Learn Facts About FOP

Stay connected with FOP Awareness Day by learning a few facts about this disease. Consider some of these to get started:

  • FOP is estimated to affect approximately 1 in 1 million people worldwide.

  • Though FOP is a genetic condition, it typically does not come from either parent and is a mutation or accident of nature.

  • The process of FOP creating bone adds to the skeletal structure of a person, causing painful flare-ups of bumps and new bone growth throughout the body.

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