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Does anyone else know about deep Morphea? I recently lost my wife,
My first time here. In 2018 my wife developed a rash on her upper legs.
Nine doctors later we found out what it was. Mayo’s readout says that it’s non pain full , Baloney! We had to get a special subscription made by a compound pharmacist that had four strong painkillers in it and I had to apply it to the area several times a day. Plus we had to put cold paks on the area, it helped a little.
The rash turned into an open wound that required her to go once a week to a wound clinic who would clean the wound and remove infected tissue then send her home where we had a home nurse come in during the week and I had to do it on the weekends.
I have sort of dealt with it but what I want to do is bring this issue to the front. The medical doctors who should be aware of this issue are dermatologists and rheumatologist. When we told these doctors what the prognosis was they immediately went on line, looked it up and was bewildered.
Am I the ONLY person who knows about how deadly this disease can be?
I have photos but they are disturbing!
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@rogie Oh, oh, I am so sorry about your wife’s death. What you might want to remember, is that autoimmune diseases are barely known to the medical fields. The focus has always been on the long known AD like lupus and multiple sclerosis and now, diabetes. So many new diseases are being recognized and most doctors don’t know how to treat them. When i was diagnosed with clippers in 2018, not ONE doctor knew what it was. The neurologist recognized the MRI but had no idea how to treat it. Luckily, there was 1 doctor at the university medical center who did know about the disease and she has overseen my care since.
You said that you would “like to bring this issue to the front”. Have you thought about being a patient advocate?
If this interests you, i could pass on some resources. What do you think?
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6 ReactionsMy heart goes out to you and to your wife. Life is often cruel. Need to go postal and get better research on this and many other like EDS which is my captor and nemesis.
Go get ‘em!! Somehow!!
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2 ReactionsJohns Hopkins has an article relating Deep Morphea and Scleroderma .
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2 ReactionsI'm sorry to hear about your wife, and what you've been through. I was diagnosed with Deep Morphea (generalised) five years ago. I keep an ongoing search for the phrase, because there's so little online about it, which is how your post came up. Even the rheumatologists and dermatologists that I see often say contradictory things to me especially about pain and fatigue. There's only one detailed paper on it, (Bielsa, 2007), that I know of. I keep a printed copy with me, to save me explaining it to medical professionals; I just hand it over. I understand wanting to advocate but within an already rare disease like scleroderma it's a rare subtype. Thank you for sharing your story, it is very helpful, despite it being very sad indeed.
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4 ReactionsI am so very sorry about your wife. What was the name of the disease? I had surgery on my right hip that got a rash and fever. Upon going to the doctor in turned out to be staph infection and I had to be readmitted and wound washed out and parts replaced. I stayed in the hospital for two weeks had to have blood transfusion. Then because I needed an iv antibiotic I wax put in a nursing home for thirty days. Then I had to take an oral antibiotic for a year. It was a horrid experience I don’t wish on anyone.
My heart and prayers go out to you. God bless
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2 ReactionsSo sorry that your wife had to live through all of that. The more people you can "educate," the better. I've had MCTD for decades, and many of the symptoms do not have treatments in the doctors' toolboxes--or are unrecognized. I respond to posts on the FB websites, mostly regarding practical adaptations, and there are always patients who can use the information in some way for what they are going through. There are also Scleraderma sites, where you might be able to aim people toward the right sort of doctor...
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1 ReactionBecky,
Thank you for your words and support. My goal is to put the spotlight on this issue. I hadn’t heard about the patent advocacy. I am not afraid to get in front of people and describe and show a couple of photos of what my wife and I had to go through.
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1 ReactionThey are mystery diseases and one virus could be the culprit, from what I learned and the virus is EBV! I've been investigating this theory and if true, lots of doctors need to be aware of diagnosing people with autoimmune disease and they could be wrong.