Like many teenagers, Jordyn struggled with acne starting around the time she hit puberty. She didn’t think of it as anything out of the ordinary, even as it worsened over time.
As Jordyn entered her late teens, things began to escalate. During her sophomore year in college, she developed a large abscess on her chest, prompting her to see a dermatologist. While she didn’t expect a quick fix, she was surprised when he told her there was nothing he could do.
“That was pretty hard to hear,” she says. “He didn’t really explain himself at first, and I didn’t believe him. I said ‘there has to be a cure.’”
After that, Jordyn tried visiting an infectious disease specialist. Once again, she received little information about exactly what was affecting her, and more importantly, how she could deal with it.
Things changed abruptly when the abscess on her chest burst.
“It was really scary because there was blood everywhere,” Jordyn recalls.
Jordyn drove herself to the emergency room immediately to have the wound treated, and stayed in the hospital for several days so the staff could treat the infection that had developed in her chest. It was during that hospital stay that she saw a surgeon who finally identified what was causing her dermatological symptoms: a rare disease called hidradenitis suppurativa (HS).
HS is thought to originate in the hair follicles, though the exact cause of its symptoms is unknown. Contributing factors that lead to HS are also unclear, although excess body fat, smoking, hormone levels, and genetic factors may all play a role, according to the Mayo Clinic.
The chronic skin condition is characterized by pea- to marble-sized lumps beneath the skin that are painful and may break open to release a foul-smelling pus. Commonly affected areas include the armpits, groin, buttocks, and breasts. In some cases, “tunnels” form beneath the skin connecting the lumps.
Although she had hoped to hear there was a clear treatment path, Jordyn was simply grateful to at least know more about what was going on.
“It was almost a relief to have a diagnosis,” she says. “I spent a lot of years not knowing what it was, and I finally had a name call it by.”
But a diagnosis did not mean Jordyn’s health problems were over.
The antibiotics she took for the infection made her nauseous, and since she couldn’t eat much, she lost a lot of weight. Normally a very active person, Jordyn could no longer go swimming or even get sweat in the wound, and was forced to spend a lot of time just lying around.
For nearly two months after the incident, a nurse visited Jordyn at her college apartment each day to care for her wound so it would heal properly. For Jordyn, the hardest part of dealing with HS wasn’t the physical discomfort caused by the symptoms. Rather, it was having her private health issues on display to those around her, which caused her to feel very self-conscious.
“My friends would say ‘what are you doing today?’” Jordyn recalls. “I would say ‘my nurse is coming at 11, but after that we can hang out.’”
Because her surgeon recommended it, Jordyn had her abscesses lanced once a month for several years so the fluid wouldn’t build up and cause discomfort. It was difficult for Jordyn to get to these appointments, and she would often get frustrated and visit the emergency room instead — a very expensive alternative.
At one point, Jordyn’s surgeon referred her to an immunologist, who wanted to pursue a different treatment approach. Thinking her issues stemmed from an autoimmune disorder, the immunologist ran a series of tests, but they didn’t provide any definitive answers. Nevertheless, Jordyn was put on a regimen of daily antibiotics for more than three years.
One of the hardest parts about living with HS for Jordyn has been explaining to others why she can’t do certain things. Because it’s such a personal disease, Jordyn has had difficulty articulating to others how HS affects her while not revealing things she would rather keep private.
“People may think I’m faking, just because I don’t lift up my shirt and show them,” she says. “People can’t see I have an open wound, but it’s there.”
To make things more difficult, Jordyn has never met anyone else suffering from HS with whom she could discuss what she’s going through. While her family knows about her HS, she finds they have difficulty understanding because they’ve never actually experienced the symptoms.
Despite all this, recent developments have been positive.
Jordyn recently began seeing a new dermatologist, Dr. Paul Hazen, in Westlake, Ohio.
Unlike the previous medical professionals who have assisted her, Dr. Hazen specializes in the treatment of HS. He is the president of the Hidradenitis Suppurativa Institute, founded in 2011 and based in Westlake, and also one of the leading pioneers in CO2 laser treatment of HS.
CO2 laser treatment is an option for patients whose HS has not responded to other medical treatments. According to the Institute’s website, the procedure is performed under local anesthesia to the patient’s targeted abscess areas. The problem areas are subsequently removed using the CO2 laser, which doctors also use to explore surrounding areas and tunnels, before evening the wound base and smoothing it to promote improved healing.
Compared to a similar procedure done with a scalpel, the CO2 laser surgery boasts a very small recurrence rate. According to the Institute, just 2 percent of CO2 laser patients suffer a recurrence, compared with 40 percent of scalpel patients.
For now, Jordyn is on a medication regimen, but is exploring other options, including CO2 laser surgery. After years of searching, she has renewed confidence that she will be able to better manage her health.
“I feel like I’m finally headed in the right direction,” Jordyn says. “Dr. Hazen understands what I have.”
Jordyn, now 23, currently attends graduate school for clinical mental health counseling in Cleveland, Ohio. When she’s not hitting the textbooks, she enjoys reading for fun, traveling, cooking, and baking. Despite her HS, she loves to exercise when she can and does everything from running and biking to Zumba and yoga.
[tweet_box design=”default”]“It doesn’t come and go. It’s an everyday thing.” – Jordyn, #HidradenitisSuppurativa[/tweet_box]
“Since I am so active, HS affects my everyday life,” she says. “It doesn’t come and go. It’s an everyday thing.”
It’s an ongoing effort, but Jordyn is working to get more comfortable with her HS. She is trying to talk about it more and has become active with online research, seeking both information on HS and connections with others who can better understand her experiences.
That was part of what led her to join the Health Stories Project Community. While she doesn’t consider herself an expert, she has some advice for others who have recently been diagnosed with HS or any other condition that isn’t obvious to those around them.
“Don’t feel the need to explain yourself,” she says. “You know that you’re having problems. It’s almost demoralizing to have to explain to someone what you’re dealing with.”
She is still learning how to live with HS, but despite the difficulties she faces because of the condition, Jordyn is committed to continuing to fight through it and live as normal of a life as possible.
“It will take a toll on you emotionally and physically, but this disease is not a death sentence,” she says.