Hello everyone, my name is Carla and I am a 47 year old woman with HS Disease.
This is my story…
I was 30 when my symptoms started, and it took 4 or 5 years to get my HS diagnosis from a General Surgeon. Currently I’m employed as a teacher’s assistant at a behavioral hospital for troubled children that range from 5th grade up to freshman year of college. We have school with them during their 7-10 day stay, and I just have to bear the pain and do my job.
The pain from HS I’d describe as severe. I take ibuprofen and it eases the pain off a little, but with the constant burning, it really doesn’t help it at all. There are several challenges I’ve encountered living with HS. I don’t have much of a social life and definitely not having a relationship. The constant pain, drainage, and odor cause me not to date at all.
To manage my HS, I have had over 20 surgeries. Trying to stay clean and dry at all times is important, along with making sure to wear loose clothing and when home, I wear a gown so I can air out. I also take ibuprofen for the pain and use antibacterial soap or sometimes, have oatmeal baths. I was under a dermatologist’s care, but moved to another city and currently have no insurance and don’t qualify for Medicaid.
There are 3 stages involved with HS and I am in the most severe stage, stage 3. If I could grant someone who was newly diagnosed with HS a wish for their future, it would be that they never feel the frustration when the surgery doesn’t help the outbreaks. I also hope they don’t experience the periods of depression, anger and hopelessness that I have.
If I did not have HS, yes, I believe my life would be different. I would be pain free and not scarred up. I would also be more sociable and possibly even dating!