On 19 September, International Thrombotic Thrombocytopenic Purpura Day is celebrated worldwide to draw attention to the problems faced by people struggling with this rare disease. The same day also marks the launch of the nationwide campaign 'aTPP. EVERY HOUR COUNTS" campaign dedicated to this rare disease.
Thrombotic thrombocytopenic purpura (TTP) is a very rare autoimmune haematological disease. The disease results in dangerous clots in small arterial and capillary vessels. The consequences of this process are very dangerous, as the disease can cause stroke, ischaemic heart attack, ischaemic kidney damage, respiratory failure or many other dangerous organ damage that can cause the patient's death. The disease occurs in two forms - congenital (cTTP) and acquired (aTTP).
Most cases are recorded young people (aged 30 to 40), women are slightly more often affected. The causes of the disease are not fully known. The course of the disease is usually very dynamic and the patient's condition deteriorates very rapidly.
Occurrence of an episode aTTP is always a threat to the patient's life, especially if there is severe ischaemia and damage to organs such as the brain, heart, lungs or kidneys. Unfortunately, this situation still occurs quite frequently. Despite current treatment One in five adults affected by aTTP dies. This is why appropriate and prompt diagnosis and the implementation of appropriate treatment as early as possible to halt the progression of the disease and prevent further episodes are so crucial.
The key to understanding the problems of patients affected by the disease is to educate and provide knowledge about it, especially where time to diagnosis plays a significant role (e.g. emergency rooms, specialist doctors). Therefore, on the initiative of patient organisations, the first information campaign has been launched to draw attention to this little-known disease and the most important problems of Polish patients diagnosed with aTPP. The campaign will include educational materials for patients and their families, specialist doctors, as well as a website - a compendium of knowledge about the disease. educational materials and a support group for patients with aTPP.
Telephone for patients. As part of the campaign, a special phone number for patients was also launched at the Institute for Patients' Rights and Health Education +48 22 628 08 63. The number can be called by patients or their relatives who wish to receive information material on the disease, as well as to sign up for educational workshops.
The campaign is organised by the Institute for Patients' Rights and Health Education and the Federation of Polish Patients, and partners are the National Forum for Rare Disease Therapy ORPHAN, the Brain Stroke Foundation. Sanofi is a partner of the campaign.