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Von Willebrand Disease (VWD) - Online Support Group

Pyoderma gangreonsum

Hi Everybody, hope you are well.

Has anybody on the forum ever had or living with Pyoderma Gangrenosum?

In December 2017, I was diagnosed with Pyoderma Gangrenosum (NOT gangrene and NOT contagious). I also have VWD (and had Atrial Septal Defect as well).

Pyoderma gangrenosum (PG) is a very rare, destructive inflammatory skin disease of which a painful nodule or pustule breaks down to form a progressively enlarging ulcer. Lesions may occur either in the absence of any apparent underlying disorder or in association with other diseases, such as ulcerative colitis, Crohn’s disease, polyarthritis (an inflammation of several joints together), gammopathy, vasculitis, leukemia, and other conditions.

Based on the stats on the internet, there are approximately 3,000 to 5,000 people with the condition in the USA. Add this beauty to my arsenal of rare conditions.

Here is a good summary of the condition and its saves you from the nasty pictures.
https://rarediseases.org/rare-diseases/pyoderma-gangrenosum/

For me, it started out as an aggressive infection in my arm in October and has resulted in an inflamed open wound on my arm (after two operations Nov 13 and Dec 22). Since December 27, the inflammation appears to be under control for now thanks to a steroid plan by a dermatologist who has dealt with PG before and the large wound is slowly healing (will probably take four to six weeks) but I continue to be concerned about a few things.

  1. Will PG come back in weeks, months etc? Based on what I have read, learned from doctors and heard from patients, there is high probability that I will have more and more episodes in the future.

  2. Does anybody know of a hematologist/oncologist and rheumatologist who has dealt with Pyoderma Gangrenosum before? PG is often times associated with various systemic conditions (listed above). I am especially concerned about the hematological ones (gammopathy, vasculitis and leukemia) given my family history.

  3. Also does anybody have a friend or family member with PG? If so, I would love to talk to that person.

Huge thank you!!!