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Thursday, 30 October 2014

The disease from my parents

One of the most difficult things to comprehend for me was being told that I need to be more clean (by my doctor). Hidradenitis Suppurativa is not caused by being dirty- that's a fact. I feel there is something special about the inverted areas of skin that we just don't know yet. My (rural) doctors have proven to be quite ignorant on the subject of HS.
We do know that opportunistic infection does occur, however most lesions are sterile. Few HS lesions contain significant bacteria or virus. In my opinion, the lesions grow as a result of the body's response to stress- at least that's the recurring theme in all of the conversations I've had with other HS sufferers. Some people with HS sweat more than others and some do not. I propose my excessing sweating under stress aggravates my HS.
Many HS patients are affected by other (sometimes auto-immune) diseases, such as Crohn's Disease, PCOS, Diabetes and Acne among others. There is an ongoing debate in the medical community about whether HS is an auto-immune or an immuno-deficiency disease. No one will argue that we need more information. More research needs to be done.
My HS is familial- I inherited the disease from my parents. My brothers and sisters have it as well, in varying degrees. I assure you, there is no amount of cleanliness that will prevent a lesion from presenting itself. I have always been a "clean freak," as my loved ones say. My siblings and I are good productive members of society but a disease like this can undermine self-esteem.
My hope is that anyone with HS (Hidradenitis Suppurativa) can learn to live with the disease without self loathing. The best thing to do for yourself is to love yourself unconditionally. Another tip: try to live as stress-free as possible, since stress is a known trigger for this disease. Exercise and eat well so that you feel well. Finally, try to connect with people who have HS. Emotional support from friends always makes coping easier. I have been researching this disease for the last ten years and have made more progress in the last three than ever. I would love to hear from others about their HS and strategies that work.

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