An article by Dr. Michael Jordan, who is on the team of leading physicians, including world renowned HLH expert, Dr. Lisa Filipovich at Cincinnati Children's Hospital.
An article by Dr. Chandrakasan and Dr. Filipovich at the HLH Center of Excellence at Cincinnati Children's Hospital
The purpose of this study is the safety, tolerability, and preliminary efficacy of a new drug aimed at controlling disease reactivation in patients diagnosed with primary HLH and having shown partial response to current recommended treatment. This new drug will be administered on top of a glucocortiosteroid, which is usually part of the current recommeded treatment.
This information was put together by various HLH and transplant families who have gone down this road before. Unfortunately many of the lessons learned were due to outdated information and the belief that all physicians know how to treat HLH. This is not the case. Make informed decisions, based on facts, not on treatment protocols for other diseases. Too many children have been lost to this disease because of over zealous physicians.
This conference is offered annually by the HLH Center of Excellence at Cincinnati Children’s Hospital Medical Center. It covers the diagnosis and management of Hemophagocytic Lymphohistiocytosis (HLH). It is geared for physicians and families dealing with HLH across the nation.
Sessions cover the biology and genetics of HLH, diagnosis, treatment, the bone marrow transplant process, and ongoing research. They also host a family session that includes social, emotional, and educational issues during and after treatment and the role of family advocacy in driving advances in research.
Here is a list of questions to ask when preparing to be discharged to return home after transplant (generally after Day +100)