From today, people suffering from thrombotic thrombocytopenic purpura (TTP) have their own shared space. The TTP Support Group was created by and for patients and their relatives. The main aim of the group is to exchange information, increase knowledge about the disease, modern treatment, improve the quality of life of TTP patients and, above all, support each other. Support was provided by the Haematooncology Association.
Thrombotic thrombocytopenic purpura (TTP) is a very rare autoimmune disease of the thrombocytopenic haemorrhagic diathesis group, diagnosed annually in approximately 30 people in Poland. It is characterised by haemolytic anaemia, severe thrombocytopenia and ischaemic damage to organs (lungs, heart, gastrointestinal tract, kidneys). The disease results in the formation of blood clots in small vessels. TTP can consequently lead to stroke, ischaemic myocardial infarction or kidney damage.
The diagnosis of the disease and the correct determination of its form (congenital cTTP or acquired aTTP) is only possible on the basis of the results of the metalloproteinase ADAMST13 activity, which is performed using a special test to determine the activity of this enzyme
The disease causes sudden, intractable symptoms and leads to a significant limitation of daily life.
Patients with thrombotic thrombocytopenic purpura are treated with plasmapheresis, or plasma exchange. Plasma exchange significantly improves the chance of survival, but even with rapid diagnosis and use of currently available treatment after a few days or weeks, approximately 30% patients will relapse. In addition, platelet concentrate is used to neutralise thrombocytopenia.
– I have always been active since I was a child - dancing, exercising, skiing, and travelling a lot with my husband. My dream is that the disease is in remission, that I never have to visit the hospital again, that I can enjoy my life. I would like to open people's eyes and raise awareness about the disease - says Krystyna Szczerba, who is living with acquired thrombotic thrombocytopenic purpura and is the co-founder of a support group.
– Integration is very much needed. A patient who receives proven knowledge in a support group is later a reliable partner for the doctor. He or she knows what the symptoms are, where and to which doctor he or she should go, what tests should be carried out. In the group, we will walk together by the hand, we will help, support and educate. - adds Katarzyna Lisowska from the Haematooncology Association, supporting the support group.
Exchange information, gain knowledge, find support! Join the group on Facebook by typing the name in the search: Thrombotic thrombocytopenic purpura (TTP) – our illness and that of our loved ones or directly under the link https://www.facebook.com/groups/1138759423599796