Home » Healthy Living » Medicine & Health Science » Diseases, Disorders and Conditions

Finding Support for Histiocytosis

Ranked #31,249 in Healthy Living, #410,816 overall

You Are Not Alone: Support for Histiocytosis Families and Kids

If your child has been diagnosed with Histiocytosis, a form of Langerhans Cell Histiocytosis or a Non-Langerhans Histiocytic disease, like Erdheim-Chester Disease, Rosai Dorfman or Diabetes Insipidus, you're probably desperate for information and looking for someone who can relate to caring for a child with one of these rare afflictions. Don't feel as if you are alone, as there are other moms, dads, aunts, uncles and siblings facing the same thing, and they're all online.

If you're in this position and don't know where to turn, there are places you can find others to talk to, day or night. This page will link you to valuable resources for finding emotional support and advice when battling histiocytosis.

Histiocytosis Organizations on Facebook

Get Connected

The Histiocytosis Association of America has an official Facebook page. On the wall you'll find posts by people who are also fighting LHC or related diseases. Another page to check out is the Histio Hereos Research Fund, set up by the Histiocytosis Research Program's Dr. Ken McClain and Dr. Carl Allen of the Texas Children's Cancer Center. The pair of doctors are known for their ground-breaking research into histiocytic disorders. Read the stories posted on the organizations' walls. Add new people as friends. There are literally hundreds of moms, dads and other family members who can relate to what you're going through.

Find Histio Families on Facebook

There are hundreds of people on Facebook seeking emotional support and advice when faced with the various challenges of Histiocytosis and LHC. Start your search here:
Histiocytosis Association of America (Organization page)
The Histiocytosis Association is dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding peer reviewed research leading to better treatments and a cure. www.histio.org
Histiocytosis Association of America (Group page)
The Histiocytosis Association of America is dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding peer reviewed research leading to better treatments and a cure.

This site is open to all patients, families of patients and, anyone wanting to learn more about these rare diseases and all the latest news from the Association. We anticipate that this site will facilitate communications between patients and families and especially between this group and the Association itself.
Jeffrey Toughill, President of Histiocytosis Association of America
Add Jeffrey to meet up with other histiocytosis families.
Juvenile Xanthogranuloma Online Support | Facebook
Facebook support group for families facing JXG or Juvenile Xanthogranuloma

Histiocytosis Association of America

Information and Message Boards

The first place I stumbled across was the Histiocytosis Association of America. The organization was set up by the Toughill family, whose daughter Bethany was diagnosed with histiocytosis as a baby. The organization began as a newsletter/support group back in 1986. Today, you can find the Histocytosis Association of America website at Histio.org.

In addition to providing a wealth of information on all sorts of histiocytic diseases, they offer a calendar of special events, volunteer opportunities and a Histiocytosis message board. It was through this message board that I found a ton of "Histio Familys" on Facebook. On Histio.org, you'll also see a "Faces of Histio" section, which features first-hand, personal stories about children battling LHC and other histiocytosis diseases. The actual journals or pages are provided by the websites CaringBridge.org.

By reaching out to others and reading about histiocytosis, you'll be more prepared when it comes to discussing treatment options with your physician. I've learned so much from others about different treatment options, which physicians to consult with, and a ton of other information I would have never known had I not had advice from others who have walked this path.

Overview of Histiocytosis

Histiiocytosis is defined as a rare blood disease caused by an excess of white blood cells called histiocytes. The cells can clump together and form lesions which can affect bone, skin, organs and the central nervous system. Though Histiocytosis is usually benign, it's often treated with steroids, chemotherapy or a combination of both. This rare disease is said to affect just 1 in 200,000 born each year, though the average age of diagnosis is between 5 and 10 years old.

Video: Histiocytosis Association of America

Finding a Cure

This is a YouTube video posted by Histiocytosis Association of America founder Jeff Toughill. The video serves to raise awareness to this rare set of diseases.
powered by Youtube

Other Histiocytosis Support Groups

Community of patiens and families

Additional websites featuring message boards and forums for family members and friends coping with Histiocytosis and related diseases.
MDJunction: Histiocytosis Support Group
A community of patients, family members and friends dedicated to dealing with Histiocytosis, together. Sorted by current posts.

Histiocytosis Information & Books

Loading

Histiocytosis Treatment Options

Collection of news and links relating to the treatment of Histiocytosis, LHC and other related Histio diseases.
Treatment of Childhood Histiocytosis and LHC
Treatment of Langerhans cell histiocytosis (LCH) may include surgery, oral, topical and intravenous medications and chemotherapy, or radiation therapy depending on the site and extent of disease. The recommended duration of therapy is 6 months for patients who require chemotherapy for bone, skin, or lymph node LCH and 12 months if the liver, spleen, bone marrow, or lungs are involved. It is preferable that LCH patients be enrolled in a clinical trial whenever possible so that advances in therapy can be achieved more quickly and to ensure optimal care.

Blog: Juvenile Xanthogranuloma Online Support

Loading Fetching RSS feed... please stand by

Comments

Would you like to connect with others coping with Histiocytosis? Leave a message below.

submit
Show All

by

Radlyn

Histiocytosis is one of those things you'll probably never hear about unless it actually affects one of your loved ones. More research is needed into... more »

Feeling creative? Create a Lens!

Explore related pages

Related Tags