In the unknown universe of rare or infrequent diseases, many go unnoticed despite their significant impact on the lives of those who suffer from them. One such condition is Immune Thrombocytopenia (ITP), a disease that affects thousands of people each year around the world. Although its name is unfamiliar to many people, ITP can have serious and long-lasting consequences.
To better understand this disease, we have the testimony of Dr. Cristina Pascual, president of the Spanish Immune Thrombocytopenia Group (GEPTI), a working group of the Spanish Society of Hematology and Hemotherapy (SEHH) and hematologist at the Gregorio Marañón General University Hospital. Dr. Pascual offers a detailed view of what it means to live with ITP, addressing both the physical and emotional aspects that affect patients.
What is immune thrombocytopenia (ITP)?
Immune thrombocytopenia, commonly known as ITP, is a rare, autoimmune disease affecting the blood, in which the immune system itself attacks and destroys platelets, the fundamental blood components responsible for clotting. This condition occurs due to a loss of tolerance by the immune system, which mistakenly identifies platelets as foreign elements and destroys them. Dr. Pascual explains that "platelets are essential to prevent bleeding, and when their number decreases significantly, the risk of spontaneous bleeding increases". In medical terms, ITP is diagnosed when the platelet count falls below 100,000 and cannot be attributed to other causes, such as infections or side effects of medications.
Differences with other similar diseases
One of the frequent complications in understanding ITP is its confusion with other autoimmune diseases that also affect platelets, such as Acquired Thrombotic Thrombocytopenic Purpura (aTTP). Although both conditions share the characteristic of a low platelet count, Dr. Pascual stresses that "ITP and ATTP are distinct diseases with different treatment approaches. While the former can be managed in many cases on an outpatient basis, aTTP requires intensive treatment and immediate hospitalization." This difference is crucial for the proper management of patients, as TTPa is a condition that can rapidly deteriorate a patient's health if not treated immediately.
The emotional impact of living with ITP
Beyond the physical implications, living with this disease carries a significant emotional burden. Once diagnosed, it poses numerous emotional challenges for patients. "The initial diagnosis is often accompanied by great uncertainty," comments Dr. Pascual. "Patients often worry constantly about their platelet counts and fear that this condition may be a precursor to more serious diseases, such as leukemia." This concern is not unfounded, as hematologic diseases can have overlapping symptoms. In addition, the lack of a definitive cure forces patients to accept the disease as a chronic condition that they will have to live with for the rest of their lives. This process of acceptance can be difficult and very long, affecting not only the patient, but also his or her family and social environment.
Physical challenges: beyond obvious bleedings
In terms of physical symptoms, patients with this pathology experience a variety of manifestations, from small bruises and petechiae (red spots on the skin) to nosebleeds or gingival bleeding. What really surprises physicians, however, is that many patients also report intense and unexplained fatigue. "This fatigue is a recurring complaint among patients, although we don't fully understand its origin from a scientific point of view," reveals Dr. Pascual. "It is frustrating for both patients and physicians, as we do not have a clear explanation for this symptom, which makes it even more difficult to manage the disease." This constant exhaustion significantly affects patients' quality of life, limiting their ability to perform daily activities and maintain an adequate energy level.
Living with the disease: continuous monitoring and support
The treatment and management of this disease require a personalized approach, especially in the early stages of diagnosis. Dr. Pascual explains that "in the early stages, we see patients every week or every ten days, depending on their platelet count, until they manage to reach a safer level." This close follow-up is essential to prevent serious complications, such as internal bleeding, which can be life-threatening. In addition, first-line treatment for ITP usually includes steroids, which help reduce immune system activity and increase platelet counts. If steroids are not effective, physicians may turn to other therapeutic options, such as immunoglobulins or more aggressive immunosuppressive treatments.
In parallel with medical treatment, emotional support and education about the disease are fundamental aspects in helping patients adapt to their new reality. The doctor emphasizes the importance of community and mutual support: "There are support groups and associations that are of great help to patients, as they allow them to better understand their disease and share their experiences with others who are going through the same thing". In this sense, the Spanish Immune Thrombocytopenia Group (GEPTI), of which Dr. Pascual is president, plays a crucial role. This organization is not only dedicated to the study and research of the pathology, but also organizes conferences and talks for patients. These events provide a safe space where patients can learn more about their condition, access up-to-date information and hear the experiences of others facing similar challenges. By fostering this sense of community, the GEPTI helps to ease the emotional burden of the disease and offers patients valuable coping tools.
Hope and future prospects for patients
Despite the many challenges presented by this condition, there are reasons for optimism. "ITP is not a death sentence," Dr. Pascual states firmly. "With proper treatment and consistent follow-up, most patients can lead relatively normal lives." This message of hope is crucial for newly diagnosed patients, who often feel overwhelmed by uncertainty and fear of the future. The possibility of living a full life, albeit with certain limitations, is a relief for many.
In addition, the creation of patient associations and the increasingly comprehensive approach to their treatment are positive signs of progress. "We are seeing a shift in the way physicians approach pathology," Dr. Pascual notes. "We now care more about what patients are thinking and feeling, and not just the numbers on their blood tests." This change in approach is essential to improving patients' quality of life, as it addresses not only the physical aspects of the disease, but also its emotional and psychological impact.
In conclusion, we would like to emphasize that immune thrombocytopenia is a complex disease that goes beyond the visible physical symptoms. It profoundly affects the emotional well-being and quality of life of those who suffer from it. However, with the right support, personalized treatment and a comprehensive approach, patients can learn to live with ITP, facing their daily challenges with resilience and looking to the future with hope. The work of organizations like GEPTI and the dedication of professionals like Dr. Cristina Pascual are critical to improving patients' lives, providing not only medical care, but also emotional and community support that is equally vital.