People living with FOP may experience unpredictable episodes of soft tissue swelling, pain, reduced movement, stiffness, referred to as ‘flare‐ups’.1–4 These flare-ups usually result in extra bone formation, but not always.4
Recognizing the warning signs or symptoms of a FOP flare-up can allow you to get the help you need for yourself or your loved one as soon as possible.
FOP symptoms due to a flare-up typically include one or more of the following:4
The first signs of a FOP flare-up can include the sudden appearance of swellings, lumps or bumps along with pain and discomfort.4 In many cases, the swellings appear on the head, neck and upper back although they may move around to different parts of the body and may disappear as quickly as they appeared.4,5
If you suspect a FOP flare-up talk to your doctor as soon as possible.
It is important to let your doctor know about any flare-ups so that they can be managed appropriately. This includes avoiding or approaching with caution any action or medical intervention that could cause further bone formation and thus make FOP worse.
FOP flare-ups can occur without warning or any obvious reason and cannot always be avoided or prevented. There are some known triggers of FOP flare-ups and these include:3,4
Being aware of what causes FOP flare-ups may help to avoid unnecessary actions or medical procedures. If medical procedures do need to take place you can seek additional advice and support to minimize the risk of flare-ups.
Vaccinations should be approached with caution. Your care team should reach out to physicians experienced in treating FOP to evaluate appropriate vaccination recommendations.
It is recommended that vaccines should be approached with caution. You should let your doctor know that the International Clinical Council on FOP provides specific vaccination recommendations in the Medical Management of FOP Treatment Considerations.3
According to the ICC, for necessary dental procedures, it has been recommended that overstretching of the mouth and injections to numb the lower jaw should be avoided.3
While activity is encouraged at all ages, it has also been recommended to avoid passive range of motion exercises.3