Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

Living With Hidradenitis Suppurativa

I have lived with Hidradenitis Suppurativa for 7 years. I can almost bet that most of you who read this have no clue what it is. That's because it's a rare disease and there is no cure for it. Don't know what causes it. However I do believe it is genetic because my father has it and my sister has it. There are stages to the disease 1, 2, 3 my dad and sister are a stage 1, and unfortunately for me I am a stage 3. It's embarrassing because it looks awful and smells horrible because of the infection that you get from the chronic open wounds that take months to close... if they do. I am no longer embarrassed by it. I want to share my knowledge and my experience with those who are scared, depressed, change their plans so they don't have to go out, confused, and angry. I believe that I can help because I've been through the same things that you are going through. I started a blog not to long ago. Right now it's mostly talking about my surgeries but I plan on putting more in there about other treatments I've tried, depression, embarrassment, and lots of other things. Please check out my blog and help me help other people. Thank you

http://hidradenitissuppurativa-tracy.blogspot.com
avenger298 avenger298 22-25, F 3 Responses Jul 19, 2010

Your Response

Cancel

I am also a Hidradenitis Suppurativa sufferer. I have found many remedies that have allowed me to be flare-up free for 1 1/2 years. Please visit my blog at hidradenitishealing.blogspot.com for updates, HS friendly recipes, and support!

I'm 13 years old (female), and I have it too. I went to my dermatologist today for the second time after taking a 3 month course of doxycycline. The doxycycline upsets my stomach a lot because I have stomach acid problems but after taking it a while, my body got adjusted to the medicine. The medicine doesn't necessarily cures it, but decreases the growth rate of the disease. Before that, I would have a bump on my underarm every week but now it's every month. Which as you can tell a big difference. So the medicine is working and I have also tried hot compression under my arm which eases the pain and unblocks the clogged abscess. I've had for 6 months, but it's okay. Some way we all have to suffer something. It's not a big problem for me because my HS id mild moderate and has only occurred on both my armpits. I have HS because my father has HS, like you. Also, my grandma has it. So basically, it's genetics. Do you have any other well working suggestions? My dermatologist has already talked to me about surgery and injections, but right now, it's not recommended.

Hi, <br />
<br />
I just came across your article after finally getting up the courage to do a bit more reseach on this disease. I've had 4 surgeries to have areas affected by this disease removed over the last 12 years or so. It's hard not to get depressed about the situation especially when there is no cure. I've got 4 more surgeries to have and I'm determined to have them all by the end of this year. Wish me luck! :D