Were can I get treatment for my brother who has a rare case of Purpura (ITP) disease?
My name is Erika Franco. The reason why I am writing you is to ask for your help in understanding the rare disease that my 13 year old brother has and how and were can it be treated.
At this moment he lives in Colombia, South America (I am living in Durham, NC here in the US studying a Masters degree in Duke University). Doctors have diagnosed him a serious case of purpura. He has had it for more than a year without any kind of permanent recovery and has been in treatment for that period of time but nothing seems to work.
During this period of time, he has had 4 serious downfalls of platelets in which he has had the count under 5000. Doctors in Colombia have been treating him with prednisone and when he receives the injections, platelets go up but then gradually go down again until he has to get the shots again. It seems to be that he has become dependent on this drug, which is also affecting his weight and health, but the illness hasn't improved. The doctors have also done the bone marrow test too see if he has lupus (because he also has the defenses low) but the results where negative so this has been discarded. .
We have talked with many doctors in Colombia but unfortunately they have not been able to find the root causes of my brother's disease and hence, the treatment is only a temporary solution.
I want to know how can I get additional information about this disease and see whether you and/or the hospital in which you work has any kind of program to study and treat strange diseases like the one my brother has.
Thank you very much for your time and interest.
ITP is a condition in which a person’s immune system attacks their platelets, and it is suspected that a virus may trigger the immune response. Children usually have the “acute” type of disease, which lasts less than six months and typically resolves with or without treatment. Cases that persist past six months are called “chronic ITP,” which is more common in adults but also occurs in children and is more difficult to manage than acute ITP.
The danger of ITP is the risk of bleeding from a low platelet count (<10,000), and treatment is often based on the severity of bleeding symptoms. Steroids can suppress immune attack of platelets and they are typically the first treatment used to restore platelet counts to a safe level. Though there are serious complications associated with long-term use of steroids, there are cases of ITP in which the risk of bleeding outweighs the risk of steroid treatment.
Other treatment options to consider include intravenous immunoglobulin (effects are temporary and often wane in a couple of weeks), surgery to remove the spleen, chemotherapy (danazol, azathioprine, vincristine, and cyclosporine), and Rituximab (Rituxan), a treatment for people with lymphoma that is now being studied for use in chronic ITP.
Ideally your brother should be treated by a pediatric hematologist—a doctor specializing in blood diseases. If treatment in the US is an option, there are a few specialists in your area associated with UNC and Duke, including the following:
Russell E. Ware, MD, PhD, Division of Pediatric Hematology, PO Box 2916, Duke University Medical Center, Durham, NC 27710.
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