MRH Support

MRH – Multicentric Reticulo-Histiocytosis

I am a 46 year old woman who was diagnosed over four years ago with multicentric reticulohistiocytosis (multicentric reticulohistiocytosis, MRH) – quite a mouthful – I know.  This website was created by an awesome guy (my husband) in an attempt to create a forum for people with this rare disease to communicate and share their experiences.  I am not a medical doctor – I am just a sufferer of MRH who is in search of support.

After researching my illness, I was saddened to realize that there weren’t any support groups for individuals with MRH.  I joined the Arthritis Foundation and have found their website to be very informative in dealing with arthritis, however, there is no specific information on MRH.  I am hoping to reach individuals who have or have had this illness (it usually “burns itself out” after 5-10 years) and/or doctor’s who have treated patients with this disease.  I am thankful that it was finally diagnosed because it was quite frustrating to have so many health issues for well over six years and not to know what the cause was.  I believe that MRH is the cause of my hypothyroidism, rapid damage to my knees, wrists and fingers and abnormal breast tissue that was removed five years ago.  I have always believed that all of my symptoms over the years were related but was unable to prove this medically until now.  Maybe it’s not important for others to receive a label for their condition, but for me, it certainly helped me to make sense of it all and to try to be active in my health care.

This site was started when I was first diagnosed with MRH.  Since then, I have made lifelong friends who share the MRH battle.  We have an email group and most of our members are also on Facebook.  Our members span the globe 🙂 – so far – we’ve located MRH sufferers in Australia, Brazil, Canada, England, Japan and throughout the United States.

If you have information that you’d like to share with us, please use the contact form to send it, or register for the discussion forum on this site!  I will contact you directly and with your permission, will connect you with fellow MRH friends.  Please do not post any personal contact information on the blog because of possible spammers.  I am forever grateful for my MRH friends.  You are all “simply the best.”(R.I.P. Steve Jackson)

I look forward to hearing from you!

Sincerely,

Pam

Multicentric Reticulohistiocytosis (MR, MRH, previously also called Lipoid dermatoarthritis) is a rare disease, primarily affecting patients in their adulthood characterized by the rapid appearance of multiple papules and nodules arising in conjunction with severe arthritis. The name was first proposed in 1954 by Goltz and Laymon. MRH is very rare. The average dermatologist, rheumatologist, or orthopedist will see at most 1-2 cases in an entire career. MRH may become inactive after several years, often after about 8 years. In about 28% of cases, the disease appears to be related to an underlying malignancy. MRH precedes the development of cancer in 73% of cases. No therapy consistently improves MRH. The response to therapy is difficult to determine because of the rarity of the disease and the lack of controlled studies.