Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Langerhans Cell Histiocytosis

What is Langerhans Cell Histiocytosis?

Langerhans Cell Histiocytosis (LCH) is a rare disorder involving the langerhans cells, typically found bone marrow, which migrate throughout the body.

 

Langerhans Cell Histiocytosis (LCH) is a rare disorder involving the langerhans cells, typically found bone marrow, which migrate throughout the body.
Acknowledgement of Langerhans Cell Histiocytosis has not been added yet.
2.0http://www.orpha.net
Synonyms for Langerhans Cell Histiocytosis has not been added yet.
Cause of Langerhans Cell Histiocytosis has not been added yet.
Symptoms for Langerhans Cell Histiocytosis has not been added yet.
Diagnosis of Langerhans Cell Histiocytosis has not been added yet.
Diagnostic tests of Langerhans Cell Histiocytosis has not been added yet
Treatments of Langerhans Cell Histiocytosis has not been added yet.
Prognosis of Langerhans Cell Histiocytosis has not been added yet.
Tips or Suggestions of Langerhans Cell Histiocytosis has not been added yet.
References of Langerhans Cell Histiocytosis has not been added yet.
Supporting Each Other Created by mdc921
Last updated 2 Jan 2009, 08:44 PM

Posted by mdc921
2 Jan 2009, 08:44 PM

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

Community External News Link
Title Date Link
Community Resources
Title Description Date Link

Clinical Trials


Cords registry

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.

  1. Complete the screening form.
  2. Review the informed consent.
  3. 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.

Community Leaders

 

Expert Questions

Ask a question

Community User List

I am a 52 yr pld with LCH I...
Brain tumor diAgnosed 9/30/...
A very, very dear friend an...
My 23 year old son was diag...
My sister has been diagnose...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Supporting Each Other

Created by mdc921 | Last updated 2 Jan 2009, 08:44 PM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.