Sclerederma versus scleredema?

Hello I am new to this site and hope to hear from others with my condition. I have an Autoimmune disease that mimics scleroderma and was originally diagnosed with deep morphea. A biopsy has shown that I actually have a rare condition called Scleredema Buschke. *Note the missing r.

There is not much data out there for this condition so I wondered what experience any other people may have had if they happen to participate in this group but actually have sclerodema ?

[Katglasgow]

Hi sorry I cant help but have been diagnosed with morphoea. Currently on high dose oral and topical steroids and appointment on weds to see if all my bloods are back to start on methotrexate? They are also checking for scleroderma of some sort? Hope you get your answers it's a nightmare trying to find out anything 🤷‍♀️ so rare to hear of anyone with the same conditions

[Mezels in reply to Katglasgow]

Hi just to let you know that I was diagnosed with morphoea at age 12. I am now 61 and I still have it. It hasn't got in the way of anything that I have wanted to do in life. People sometimes ask me about the "bruises" on my arms so I just explain what it is and tell them that they can't catch it.

[Jmiller623]

Hi Overcomer! I don’t know much about scleredema but let’s break down the name.

Scler = sclerotic, basically tightening, scarring, hardening of something

Derma = dermis or skin

Edema = swelling due to leaky blood vessels, water in the tissue

If I had to guess, scleredema is sclerosis of edematous areas which can happen anywhere but more commonly in extremities and sometimes the gut. The edema could be mistaken for inflammation inducing a sclerotic process. I’d imagine it effects large areas given the gravity dependence of edema.

Scleroderma is sclerosis of the skin. We still don’t understand why. It’s a fast moving condition that doesn’t allow for many gaps in care.

Hope this helps in some small way. I feel for you. Morphea can be quite disfiguring and stressful. It sounds like you have a great team and I hope they help you with regard to treating this rare condition! Sending hugs your way.