There is a good book that has come out in October, 2005 An Illustrated Guide to Skin Lymphomas, Cerroni, Gatter, Kerl, 2nd. Ed, that devoted most of chapter 4 to LyP.

Okay, I know you are wondering about the lymphoma cancer link. Most papers on LyP suggest that 10-20% of LyP patients go on to develop an associated CTCL (cutaneous t cell lymphoma).  My advice to you is not to dwell on what might or might not happen in the future. Try to live a healthy lifestyle and think positive (some doctors and patients believe that stress increases the amount of lesions). If you do develop symptoms of lymphoma (swollen lymph nodes, fever, unexplained weight loss, night sweats) contact your doctor.

If you have LyP (as verified by your doctor’s diagnosis and a biopsy slide and report from pathology), I would strongly recommend that you join the Lymphomatoid Papulosis Central Registry at Beth Israel Hospital in Boston, MA.

In my biased opinion, if anyone is going to find a cure for this condition, it will be hematopathologist Marshall E. Kadin and his colleagues. (On March 1, 1999, Dr. Kadin wrote in an e-mail: There are two LyP funds. One is at my hospital and the other is in Fargo, North Dakota, organized by Warren Macaulay, the man who first described LyP.  His fund is supporting a research project in my lab to look for a possible virus in LyP. We are making the first rigorous investigation of this possibility and should know the answer within a year). You can e-mail Dr. Kadin at mkadin@caregroup.harvard.edu to get more information about joining the registry or to learn about his LyP clinical trials.

I was unable to locate an online support group for folks with LyP, so I started an electronic mailing loop in September 1998. This allowed folks to submit group posts to “discuss” what’s happening in our lives and the medical research community in regard to this disorder. We have now switched over to a mailing list, which makes it easier for folks to post to our discussion group. If you (or a family member) has LyP and would like to join a wonderful group of folks from around the world.

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