Rareshare

I just visited my sister, and she is definitely not going to live much longer. The steroid treatment has increased her body size by a huge amount, and she no longer can carry on any reasonable conversation. I wish that someone knew how to cure this dreaded disease and could find more effective ways to treat the problems without using steroids. Does anyone else know about or have this disease?

Posted by khaburkli
1 Apr 2009, 01:15 AM

Dear Lady: I'm sorry for what you have been going through. I read that patients with anti_ta and anti hu antibodies have severe neurological complications. I just wonder, what was the primary tumor diagnosed in your sister? All I can say, it is that some time alternative medicine can aliviate pt's symptoms. Some of them are not FDA approved, and you have to be careful with drug interaction with other medicines, or even contraindications. When I was taking, this class Health care and prevention at the U, I read about this guy, Kevin TRudeau. He has written many books, you may want to contact him and see if he can guide you. I am a first year PA student, and I am doing a paper on this desease. This is how I found you. I f you were kind, Would you mind telling me a little bit more about "resenting antibodies" and the treatment dosis? I wish you well, and the best luck in this difficult journal that you and your sister are encounting. Sincerely, KBT

Posted by pmauzy
13 Feb 2009, 01:02 PM

I have a 66-year-old sister who was diagnosed with paraneoplastic limbic encephalitis approximately 1 year ago. Her doctors are giving her steroids and "resenting" her antibodies (plasma exchange) to combat the disease. She continues to grow in size and decrease in energy. Does anyone have any treatment suggestions that might help my sister survive this horrible disease? Does she need to continue with the steroid infusions which create other problems? Comments?

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Clinical Trials

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.

Enrolling is easy.

Complete the screening form.
Review the informed consent.
Answer the permission and data sharing questions.

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.