What happens when you develop a serious autoimmune condition at a young age? For young people living with Hidradenitis Suppurativa (commonly called HS), it can mean embarrassment, pain, confusion, and the frustration that comes with limited information.
While the average age of onset for HS, a painful, inflammatory autoimmune condition that develops when hair follicles in the skin become blocked, is believed to be 18-29 years old, many experience it at a much younger age.
Awareness is one of the first steps towards gaining clarity around health conditions, but due to the stigma and lack of a proven test for HS, stories and research data concerning adolescent-onset is scarce.
We asked members of Health Stories Project to share their HS diagnosis experiences. While some of their experiences may be difficult to read, these honest, candid stories are a gift to the healthcare community and to younger folks who are looking for answers.
The following is just a few of the stories we received:
“The first outbreak I’ve ever had was when I was 13 years old. It was very scary for me. I was alone and tried to look up information on what was happening, but I was not finding any information at all! I did not say anything in the beginning because I thought something was wrong with me.
You hear about people having one or two bumps usually under their armpits and that is the first sign of HS. For me, it was different-very different! I literally woke up one day in pain under both of my arms. When I went to see what it was, I was shocked to see that I could not see my armpits at all. My underarms were covered completely with bumps. Itchy, big, and red bumps were everywhere under my arms.
I didn’t say anything because I was very active and participated in many sports and I did not want to have to stop playing sports because of this. When I finally told my Mother (months later), she took me to several doctors because no one could diagnose exactly what was wrong with me. This did not make me feel any better at all!
Finally, we found one doctor that knew exactly what it was and diagnosed it as HS. Since we had seen so many doctors, we did not take the word of this one specific doctor because we had heard so many different things. He referred me to a specialist who also said it was HS and gave me more information. I was sad and felt like something was wrong with me, but I was determined not to let it stop me from living my life! “
“I was 18 or 19 when I first received my diagnosis. It was petrifying because I went from OBGYN to OBGYN (because of the placement, I thought it was a gynecological issue) being tested for Herpes over and over, never receiving calls back. Meanwhile, it was getting worse. I wasn’t diagnosed until a tunnel tract got infected and rose two inches above my skin and I went to an urgent care. The resident at the urgent care knew exactly what it was and referred me to a surgeon.”
“I was 13. It was horrible because it was in a private region and I was scared and ashamed so I kept it hidden.”
“I was just 12 years old. It was very embarrassing and confusing. By the time I would reach my locker at school each morning, without fail, the armpits of my shirts would be drenched with sweat. I never wanted to take my coat off. The abscesses made me move and walk funny to avoid them touching or rubbing anything.
I never wanted to get too close to anyone and I was scared to wear certain clothes. These and other factors killed my social life. “
“I remember being 12 or 13 and having giant welts on my groin area which I always thought were related to me being a swimmer and wearing a very tight swimsuit. It was painful and uncomfortable. I was always self-conscious that someone would notice.
When I got them during adulthood the welts were mostly on my underarms. They would be so painful that I would sometimes have to call in sick for work and couldn’t comfortably move my arms. At one point I went to the ER to get one drained. For years, doctors dismissed my experience and told me to lose weight.”
“I was about 14 years old, but I was so embarrassed I kept it to myself. Then it got so painful I told my mother which lead to taking me to a doctor. In 2010, when I was 15, I had my first operation where they removed the cyst. Their theory was removing the lump from my auxiliary region would give me relief. It was blocking my sweat glands.”
“Looking back, I was 11 when I experienced my first outbreak. It appeared in the crease of my leg behind my knee. It was extremely painful and my mother thought it was simply a regular random boil. Looking back now and where I’m at and my experience with HS, it was definitely this condition greeting me with a warm welcome. “
“I had two lesions pop up on the insides of my elbows when I was 15. My friends’ parents accused me of shooting up drugs when they saw the scars. Then I got one on my face. “
Were you diagnosed at a young age? Tell us about your experience in the comments below or check out our story requests to discover more ways to share.