I was 8 when my symptoms started, and it took another 10 years to receive my HS Diagnosis from a Primary care physician. Currently, I’m a registered nurse and have worked doing bedside care for 11 years before obtaining a position in information systems.
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I am a Nurse and have been for 12 years, but HS disease has affected the field that I am employed in. Psychiatric nursing was my passion and I excelled with that population, as well as medically fragile patients. I cannot physically endure caring for them full time though due to pain from flares or areas where I’ve had surgical procedures in the past. Now I stick with office nursing jobs.
I was 10 when my symptoms began, and it took another 18 years before I got my HS diagnosis from my Primary Care Physician. I am currently in the second stage of HS and I work as a Forman at a landscape company, and yes, HS has affected my job. I will usually call in when it gets bad enough although I do try to stick it out when I can.
To manage my HS I see a wound care physician, an immunologist, and an internal medicine doctor. I struggle to manage my HS because I have multiple drug allergy syndrome, and I can’t take a lot of the medications that are used to treat both HS and infections. The immunologist and I are currently working together to find out which antibiotics I can take. So far, we’ve established that I can take daptomycin infusions and they work to treat my MRSA infections. I also take Spironolactone, which helps slightly.
There have been a few challenges I’ve encountered dealing with HS. Things like losing friends and family… they either didn’t want to believe that I was in too much pain to hang out, or threw my “laziness” in my face. They refuse to understand the fatigue that goes along with a bad flare. I also have to wash my hair by bringing my head down to my hands. I can’t lift my arms to do it the “normal” way, because the scar tissue is so tight and it feels like it could tear at any given moment.
I was 16 when my symptoms started, and it took another 9 years to get a diagnosis from a Nurse/Midwife. I only suffered a couple small stage 1 flares on my inner thighs ages 16 through 24. When I became pregnant at 25 the HS began to slightly worsen. That was when I was diagnosed by my midwife.
I was 15 when my symptoms started, and it took 2 years before a Plastic surgeon diagnosed me. A few years back, I had to quit my job at a poultry plant after 13 years because HS prevented me from having a physically demanding job. In addition, I was burned out from being in pain 24-7.