I support H.Res.1037 – Expressing the need for enhanced public awareness of Hidradenitis Suppurativa, and for the support of the designation of a National Hidradenitis Suppurativa Awareness Month., and am tracking it using OpenCongress.org, the free public resource website for government transparency and accountability. I have Hidradenitis Suppurativa. No surprise since that is the reasoning behind this letter. I have had this skin disease since I was 12 or 13 years old and now I’m 29 years old. I was like any of teenage girl. 5’7 tall for my age only weighed 110lbs.
Of course I was 13 I did not smoke not did I drink I was not over weight either. I lived with these what we thought we just cysts see my mother had them if they got bad I just went to the doctor to have it opened or for meds. As time went on the worse it got about 2 years ago I had had enough I went to my mother and told I’m done I want this one cut out so together we found a surgeon. He took one look at me and told me I had HS that he couldn’t do a surgery. I then found a plastic surgoen. He told me he could but wouldn’t I wasn’t that bad. So he prescribed me antibiotics to take every day for the rest of my life. The disease did not get better it was worse so I was moved up to two pills a day. I took my pills but still got so many cysts it’d make most people break down.
But I didn’t lived on the only way I knew how to in pain. You have to think I’m living with something that can be up to a size of a softball under my arm breast and groin. It hurts! It smells! And did I say it hurts! Finally my dr gave me pain meds. And I’m seeing a dermo that’s tryng something else too but this isn’t my whole story just parts of it. I didn’t go into losing my house going on fmla to make sure I kept my job or the break down I had and had to be placed on antidepressants. No this is just my little ole story about a girl with a painful skin disease no one has ever hear of! That there is no cure for! No approved treatment in the usa! And why is this??? Why does other diseases get attention but not this one? I have to ask because I know I have thought of killing myself but couldn’t do that to my friends and family. But I know others that didn’t have that. They lost their will of fight! Do you know what we have to go through drs that think we are over playing this. People that think they can get the disease or it’s something we did? Oh and that all you need to do is lose weight? Or stop smoking? Stop drinking? The number of doctors you have to go to before someone know what you have I only had 6 total I was lucky. I wasn’t told I had an std. Some others not so lucky! Why not pass this? If not a month then why not a week????
Sincerely, Kristen Houston
https://www.opencongress.org/contact_congress_letters/73492-H-Res-1037-Expressing-the-need-for-enhanced-public-awareness-of-Hidradenitis-Suppurativa-and-for-the-support-of-the-designation-of-a-National-Hidradenitis-Suppurativa-Awareness-Month-Tags: Politics Treatment