As of today, people suffering from thrombotic thrombocytopenic purpura (TTP) have a common space. The TTP Support Group was created by and for patients and their relatives. The main goal of the group is to exchange information, expand knowledge about the disease, modern treatment, improve the quality of life of patients with TTP, and above all, mutual support. The support was provided by the Hematooncology Association.
Thrombotic thrombocytopenic purpura (TTP) - our disease and our relatives' disease
Published Feb. 8, 2022 09:46
Thrombotic thrombocytopenic purpura (TTP) is a very rare autoimmune disease from the group of thrombocytopenic bleeding disorders, diagnosed annually in Poland in about 30 people. It is characterized by haemolytic anemia, severe thrombocytopenia and ischemic damage to organs (lungs, heart, gastrointestinal tract, kidneys). As a result of the disease, clots form in small vessels. TTP can consequently lead to stroke, ischemic heart attack and kidney damage.
The diagnosis of the disease and the correct determination of its form (congenital cTTP or acquired aTTP) is possible only on the basis of the ADAMST13 metalloproteinase activity results, which are performed using a special test for determining the activity of this enzyme
Illness causes sudden, bothersome symptoms and leads to a significant limitation in everyday life.
In patients with thrombotic thrombocytopenic purpura, plasmapheresis, i.e. plasma exchange, is used. Plasma exchange significantly increases the chance of survival, but even if diagnosed promptly and the treatment currently available is applied after a few days or weeks, approximately 30% of patients will relapse. Additionally, a platelet concentrate is used to neutralize thrombocytopenia.
- I have always been active since childhood - I danced, exercised, went skiing, and my husband and I traveled a lot. My dream is that the disease will be in remission, that I will never have to visit the hospital again, so that I can enjoy life. I would like to open people's eyes and raise awareness about the disease - says Krystyna Szczerba, who lives with acquired thrombocytopenic purpura and is a co-founder of the support group.
- Integration is very much needed. A patient who receives proven knowledge on a support group is later a reliable partner for the doctor. He knows what the symptoms are, where and what doctor to go to, what tests to do. In the group we will walk hand in hand, we will help, support, educate - adds Katarzyna Lisowska from the Hematoonkologiczni Association, supporting the support group.
Exchange information, gain knowledge, find support! Join the Facebook group by entering the name in the search: Thrombotic thrombocytopenic purpura (TTP) - our disease and our loved ones or directly at the link https://www.facebook.com/groups/1138759423599796
Source: math. press releases
