Langerhans Cell Histiocytosis (LCH) is a rare disorder involving the langerhans cells, typically found bone marrow, which migrate throughout the body.
Looks like there are only 3 of us in this community. Can we begin a discussion around the details of the LCH in our lives (whether it's us or our loved one)? My son, age 23, was diagnosed in November, 2008, with single-system (bone) multi-focal LCH. He began chemotherapy today (1-2-09). In all the research I have done, I have found no references to the symptom that put him in the hospital the first time, leading to the CT and MRI that found his skull lesions. On 2 separate occasions, he had episodes of altered mental status, including violence and aggression, with no recall of these events. This young man is actually a very calm, shy person. Two of his skull lesions have extensions that press on the lining of the brain, but no one has said they are responsible for this weird behavior. I have seen references to CNS involvement, but other than the hypothalmic-pituitary problems, nothing about behavior changes, altered mental status, or amnesia. Anyone out there have similar symptoms? Thanks, Mary
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
My 21 year old son was diagnosed with ankylosing spondylitis in June, 2007.
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