Atopic Dermatitis & Subcutaneous Mucinosis

Thank you for your time and inputs. I believe these Information are very useful to me. I had a moment of alopecia about a year ago and my hair at the back upper neck fell out significantly. Then I started biologic treatment with Dupixent, bi-weekly for a few months and my hair completely grew back, and I stopped shredding hair.

However, I'm having Mucinosis (excessive mucin deposition, at least deep within the dermis and can possibly include subcutaneous tissues and internal organs). The gelly-like material acts as a carrier of inflammatory chemicals, which is what our bodies are designed to do as a protective system to arrest antigens, as they are deemed as a threat to our bodies. So everyone has mucin, but something is causing my body to overreact to common surroundings and secrete excessive amounts of mucin, to the point that the excessive mucin deposition begins to out-size the natural spaces in-between, and eventually overwhelm my collagen bundles. Now the collagen bundles are being tightly pressed, squished or squeezed together. If you can imagine what a body would feel like if it is being steadily filled with formaldehyde, or excessive blood keep flowing into our organ tissue chambers, become sludgy and causes our subdermal bundles to become hardened - this is what we might liken to "Priapism".

This phenomenon is happening below my epidermis, ranging throughout my entire body, more severely, the trunk of my upper body from about the waist line abdomen, chest, neck, jaws, face, forehead and entire head including both of my ears. This is more so known as the "ScleroDerma look-alikes, sound-alikes". Here, we have:
ScleroDerma
SclerEdema
ScleroMyxEdema
PseudoMyxoma
Among others, all that might be discernable on a biopsy slide, using blue stain to contrast from the collagen bundles and their in-between spaces. In my case, I've been diagnosed with Mucinosis and SclerEdema. (See image attached.)

You can look into the sections titled:
Histopathology & Pathophysiology
https://www.ncbi.nlm.nih.gov/books/NBK545159/#:~:text=The%20scleredema%20of%20Buschke%20Type,rash%20may%20precede%20skin%20induration.

I think it's worth looking into anything T-Cell & Lymphoma related diseases, perhaps as an underlying condition, since my father did have disorders relating T-Cell phenomenons - he passed away from having complications with Human T-Cell Leukemia Virus or Human T-Lymphotropic Virus (HTLV).

Hello dear , I am glad to see that you have reached out to us. Last time you and I communicated, I believe that there was not yet a diagnosis for your very uncomfortable symptoms. Unfortunately, it appears, having looked for more information, this Mucinosis is quite the rare diagnosis, as noted and discussed further here: https://www.dermcoll.edu.au/atoz/follicular-mucinosis/. Regrettably, I haven't seen any pertinent articles here on our Atopic Dermatitis site about your diagnosis. However, you may find some support and value on our fellow site, "Rare Diseases": https://raredisease.net/. There are many community members there who may be able to guide you to finding out more information, like this one: https://raredisease.net/basics. As well you will be in time for their community giveaway the end of this month! Please let us know your thoughts... We genuinely care about you, your health and well-being. Sending healing hugs to you, Liz - AtopicDermatitis.net - Site Moderator