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This post is graphic and candid. This will be a two-part post. In Part One, I will be dealing with what Hidradenitis Suppurativa HS is and giving you some background into the disease and the psyche of its sufferers, as well as my story.
My HS symptoms are gone. I have found out what triggers it in me and how to avoid flare-ups. However, I encourage you to continue reading.
In order to find someone else with the condition, I first had to admit to them that I had it too. The disease caused me considerable pain — both physical and emotional.
It damaged my self-esteem while I was growing up and limited the activities I was able to do. It has left me with scars. While the physical scars have faded and disappeared since going Primal, the emotional ones will always be there. Imagine a girl just going through puberty, with all the stress and problems that puberty normally entails, and then add that frightening skin condition.
Imagine that you are that girl and your friends are having a pool party. You really want to go but you are afraid that your bathing suit might ride up in the back and someone might see.
You are afraid of being intimate. You think that people will think you are diseased, infected, contagious, damaged. Imagine the fragile self-esteem of a teenager who is afraid to reach out for help and who feels isolated and alone.
I imagine this is how some gay teenagers must feel. I am lucky that I had parents who constantly built me up in other ways, or God knows how I may have turned out. No one knows what causes this disease. No one in Western medicine has a clue. No one ever suggested perhaps it was something I was eating that was causing the outbreaks.
If you want to jump right to pictures, visit DermNet. Please be warned that the pictures are graphic and might contain the occasional penis, vagina, nipple or buttock. After all, these are the areas that are affected most often.
It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage suppuration — hence the name involving significant scarring. Abscesses may be as large as baseballs in some people, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal.
Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage. Persistent lesions may lead to the formation of sinus tracts, or tunnels connecting the abscesses under the skin.
At this stage, complete healing is usually not possible, and progression of the disease in the area is inevitable. Occurrences of bacterial infections and cellulites deep tissue inflammation are likely at these sites.
Because of the drainage which may have a foul odor, fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public.
HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight. HS typically goes undiagnosed for years because patients are ashamed to speak with anyone.
When they do see a doctor, the disease is frequently misdiagnosed. Only relatively few physicians are able to recognize it and even when they do, suggested treatments are often ineffective, temporary and sometimes even harmful.
There is no known cure nor any consistently effective treatment; what works for one person may not work for another. In advanced, chronic cases, surgery is often the choice, but recurrences of HS are not uncommon. Historically, HS has been considered a rare disorder, because it is difficult to accurately estimate the number of HS victims; they conceal their condition, even from friends and close relatives.
Estimates, however, indicate at least 1 million — potentially up to 12 million — Hidradenitis Suppurativa sufferers in the United States alone! Then take a look around. I bet you know at least five — if not more — people that have this disease.
I am the only person I know that is willing to talk about it, but once I opened up to a couple of friends, they told me that they had it too! My doctor referred me to a dermatologist, who told me there was no cure: There is no cure.Reddit gives you the best of the internet in one place.
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