What in the world??

---

As is surely with the rest of you scleromyxedema members, the mystery is huge. Not sure when I truly started with this disease but it's become official in summer of 2021. Symptoms that were thought to be rheumatoid arthritis, walking difficulties, or bunions were dogging me since 2015, but it was the ankle mark that alerted me to something going on in fall of 2019. It was originally the size of a nickel, red like a birthmark, and my husband noticed it had grown 4x its size quickly. I looked on the other ankle and found a smaller matching mark, also red. I also noticed raised bumps that were symmetrical, too--what was on the left leg was also on the right and in about the same exact place. The symmetry is ODD.

During 2020 no one was given medical care or allowed tests due to the latest bug (and I've had this bug which affected me more mildly than any cold or flu I've had), thinking the bug was worse than anything and forcing too many to forego cancer treatments or other tests and treatments. It wasn't until April 2021 that I was allowed biopsies on my ankles and legs which confirmed the condition. It took six pathologists who had never seen such things in a slide, all in several locations, a couple of months to come up with diagnoses....scleromyxedema was the conclusion all six of them independently found. A second round of biopsies on my arms confirmed that finding.

I'm now supposed to see the Brown University specialists and see what the next step is, how far along I am into this disease, the potential treatments, and so on. Really wanting to know what the PROGRESSION of this disease is and how fast it takes over our abilities to do simple things--do the joints seize up first, or the jaw locks/mouth shrinks, do the eyes go first, etc. I am deaf since age 9 months, so the idea of going blind is worrisome as that is how I hear. I do not know sign language as I am a lip reader. But knowing the progression of this condition is critical to making decisions going forward, so if there are any who are further along in their cases than I am (or family members of scleromyxedema patients who bear great witness to this), I truly want the naked truth about mobility, sight, agility, loss of independence, cognitive issues, skin thickening, and the time line on the quality of life.

I'm also happy to donate my body as a LIVING subject to the study of this bizarre condition, willing to try any new and radical treatments that may pave a way for others--give me the forms and I will sign as long as that research facility pays all the medical bills. I actually suspect there are more of us than we think....and if not, what in the world??

Best of everything to all of you in every possible way. Cheers--Terry