The ITP Foundation announced today that it is planning a very special workshop for children who have been diagnosed with the bleeding disorder ITP (Immune Thrombocytopenic Purpura). The workshop, which will allow children, their parents and their siblings to get together and share their feelings and concerns about ITP with each other, will be held in 2006 at a date and location to be announced.
ITP is an autoimmune disorder of unknown cause that affects both children and adults. In children, rapid onset often follows an infection. ITP occurs when the immune system malfunctions and produces antibodies against the body's own platelets. These antibodies destroy the platelets, resulting in a decreased level of blood platelets needed for normal blood clotting. As a result, children with ITP experience bruising and/or bleeding throughout their bodies. In some instances, ITP can lead to life- threatening bleeding episodes. Children with chronic cases require regular monitoring and treatment and must initiate lifestyle changes, such as avoiding sports or physical activities during periods of low platelet production.
Discussing the need for this workshop, Michael E. McGuire, Jr., Chairman of the ITP Foundation, stated that "children with ITP often feel isolated. ITP is a fairly rare disorder, affecting about 4 in 100,000 children. Many times a child won't know any other children with ITP.
"Meeting and talking with others who have direct experience with a disorder like ITP is very important," McGuire continued, "especially for children. Their condition may cause them to feel like an outsider, different from other children, especially when it comes to sports and similar activities. Bringing them together with others who share their experience allows them to talk openly about their concerns, to get advice, to discuss their challenges and to celebrate their triumphs. It allows them to form bonds with others who can become an integral part of their support network."
In addition to allowing patients and family members to meet and interact, the Workshop will also be a primary source of up-to-date information on treatment options. "We intend to invite a number of doctors with significant ITP experience, as well as industry officials," McGuire said. "That will provide an excellent opportunity for parents and patients to learn about new developments, and for doctors and pharmaceutical representatives to hear about the unmet needs of the patient population."
More information regarding date, location and agenda will be provided at a later date. Those who wish to be kept informed about the Workshop can call the ITP Foundation at (203) 655-6594 and ask to be added to the 2006 Children's Workshop list.