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Friends, today we want to tell you about a very rare and extremely complex disease that affects children and adults all over the world, including in our country. We'll talk about FOP.
Fibrodysplasia ossificans progressiva, or FOP (from Latin fibrō - "fiber" + dis - "disorder, disorder" + Ancient Greek πλάσις - "structure, structure"; Latin os, ossis - "bone" + facio - "ossification") is a very rare genetic disorder in which the body forms bones in places where they shouldn't be: inside muscles, tendons, ligaments, and other connective tissues.
Symptoms of FOP usually appear in the first 20 years of life, with most patients becoming aware of the disease within the first 10 years.
The formation of "extra" or "superfluous" bones can be caused by:
Ossification can also occur spontaneously. To date, scientists have not been able to determine exactly what triggers this process or what can stop it.
Bruises, cuts, fractures, and especially surgeries can trigger the formation of new bone formations—and not only at the site of a hematoma or removed bone.
In our country, there is only one organization that aims to create a registry of all patients with FOP, and also provides assistance to the patients themselves, and supports and educates their relatives. This is The Interregional Public Organization for Assistance to Patients with Fibrodysplasia Ossificans Progressiva "Living with FOP".
According to Anna Belyaeva, Deputy Chairperson of the Foundation, Head of Government Programs, and Consul of the international organization IFOPA in Russia, 80 cases of FOP have currently been confirmed in our country.
The leadership and partners of the organization "Living with FOP" hold annual conferences and master classes for specialists, patients, and their families.
The conferences focus on medical support for patients with FOP, including:
In addition, social aspects of patients' lives are discussed: access to medical care, psychological support, and integration into society.
Patients with FOP must carefully select care products and daily dressings. It is recommended to use only atraumatic dressings and non-adhesive (i.e., non-stick) dressings or dressing fixation devices. For example: