Maria Schraff | 61 | Sweden
Today I am 61 years old and just last year in August, in 2017, I saw the name of my disease in my journal, Hidradenitis Suppurativa, Hurley III. That was very late since I have suffered from it since the late 70s…!!! Totally confused, I called my chief dermatologist and asked her what she had written. She explained and for the first time I realized that I didn’t just suffer from severe abscesses, but that I actually had a skin disease with a name…
Since then, I have studied HS a lot, mapping my own life, trying to figure out the reason for its outbreak and then, of course, trying to live with it, having/leading a so-called normal life with this painful disease.
Apart from the fact that HS is a possible genetic disease, I am today pretty convinced that a long-term overdose of antibiotics at a young age had a lot to do with its outbreak. I was on antibiotics from the age of three until the age of 18, when they finally removed my tonsils. A year later I also became PC allergic.
Other reasons that may have caused my HS to deteriorate are grief, sorrow, and stress. Looking back at my life I can clearly see that after divorce, deaths in the family, stress at work my HS has become worse.
I have gone thru most treatments for HS that there are today; ordinary surgeries, plastic surgery, laser treatments, CO2 laser, long-term antibiotic treatment, and Humira treatment. I can only draw the conclusion that none of the above treatments can, nor will cure HS. It is, today, a very painful disease WITHOUT a cure!
Today, I fight HS by trying to change my lifestyle; what I eat and drink i.e. diets, I take frequent Epsom salt baths, I eat a lot of vitamins, and I try to lead a stress-free life. So far, I managed to keep my inflammation level down, at a reasonable level. That means, at least keeping out of bed gives me a better quality of life. For me, exercising is more than difficult. I have had to give up most sports that I love, eg skiing and horseback riding. The only sport that works for me now is swimming.
The future is insecure. I have been on sick leave from work now for over three years. I have difficulties walking due to my abscesses and scars that constantly are painful and draining. Just three weeks ago my local municipality granted me a handicap parking permit. Just having that has been of great help in coping with my daily life, eg grocery shopping etc.
Living with HS is PAINFUL and HARD but thru raising awareness around the globe, we can at least hope and pray for a cure!