We have the pleasure to host on our pages an important contribution of the president of AIPIT, Barbara Lovrencic.
Aipit it’s the acronym for Italian Association Immune Thrombocytopenic Purpura. We are a no profit organization of people with Itp and parents with children afflicted by Itp. Our purpose it’s offer help to those people and their families. Offering support to those people means not only promote the mutual help between human-being, but also the formation and the awareness, promote actions of advocacy and empowerment, promote scientific research and the professional updating of doctors and of health operators, promote the safeguard of the rights of patients.
2) Why an association of people for the immune thrombocytopenia? Tell us the story of AIPIT.
Itp, or autoimmune thrombocytopenia, it’s a chronic and rare disease. I’ts an autoimmune disease where the immune system destroy the platelets and makes the patient vulnerable to spontaneous bleeding. In his chronic from Itp involve important fluctuations of the number of platelets or the constant lack of platelets with the consequent bleeding or risk of important bleeding. The seriousness and the symptomatology of the disease change from a patient to another but the constant fear that the situation could turn badly in any moment it’s commune. Often this fear go with a sense of solitude because for the people around it’s difficult to understand what it means. With Itp things get complicated because it’s a disease that isn’t well-know and often patients have the suspicion that their doctors could really give them the adjust care. AIPIT born in the 2010 in Costermano, Verona, by the initiative of a group of people afflicted by Itp and by parents of children because we didn’t want to feel alone once again with our fears and our doubts but above all because if we for first didn’t fight for our rights, nobody will do it for us.
3) How concretely AIPIT “takes care” of people with immune thrombocytopenia?
First of all we take care listening the person that need it in a moment of his life and sharing our experience with Itp. People that answer to the phone or to the email that we receive are patients or parents. We have also a closed Facebook group that is very active, where we share bad moments and joyful moments. We share the anxiety of the pre-blood sample and support ourselves if isn’t good and we celebrate if it’s good. Another way to take care it’s giving informations to people about Itp through our website. Online unfortunately you can found anything. We are also very busy in the providing points of view of patients to the doctors. Having correct medical informations about the disease and his treatment it’s essential. We are also very busy in giving to the doctors points of view of patient’s way of living the disease. For the role that everybody had in the relation doctor-patient it’s inevitable that there’s different points of view but it’s very important create a dialogue and share this points of view to understand each other and creating that trust that give serenity to the patient. This serenity that grows from trust it’s an important part of the care. A last method with we take care of people it’s our task for obtain helpful benefits. We didn’t arrive yet where we want to reach, but our task don’t stop. We’ve been also the active part in the writing of the National Plan about rare diseases.
4) You get familiar with narrative medicine, indeed it’s in a finalization phase a work that concern the collection of 150 narrations of adults with immune thrombocytopenia and of 50 parents of childrens with that disease. There is an huge adhesion to this initiative, revealing the necessity of make your voices heard. What do you think about this big adhesion?
Like I have already say before, the person with Itp often felt alone and abandoned. The doctors that take care are hematologists, accustomed to treat acute diseases like leukemia. It’s true that Itp isn’t a disease with an high mortality level but often we forget that it’s a chronic disease. And the fact that a person take it with himself always and everywhere, loom. A chronic disease don’t go away. This is the first time that someone ask to those people that live with Itp: How do you feel? How do you live with Itp? For the first time we felt that someone cares to know what means living with Itp and that our feeling matter.
5) What could narrative medicine add to the clinical studies and to the traditional questionnaire of life quality?
In my opinion narrative medicine add the “man”. The numbers doesn’t tell us how much a thing loom in emotive terms. We are human-beings and that concern also having feelings. We could like it or not, but are our emotions that make our choices and often make us tired in the evening. Narrative medicine allow freedom of expression that permit the sharing of our deepest living, the true one, genuine and without masks, without feeling influenced or forced to please expectations. Often when we talk of Itp we heard that the chance of having certain kind of hemorrhages is of 1%. The number is reassure but doesn’t tell us the fear and the emotive weight that hides behind this “only” 1%. About numbers, thing get complicated if you are that 1%. With narrative medicine we can gather perspectives of the living with a disease that complete and give also a new light to the records collected with the traditional method.