The skin condition hidradenitis suppurativa, or H.S., is not just difficult to spell. A Redmond woman who suffers from the disease said it can be hard to describe.
“It can happen anywhere with skin, especially where skin is touching other skin, and there is any sort of friction,” said Allison Jordan.
The disease, which often occurs in areas like the armpits, groin and under the breasts, was once considered rare, but it turned out that many people had it but didn’t want to come forward, Jordan said. Others, like Jordan, 30, are misdiagnosed for years.
At one point, taking a shower felt like having battery acid poured on her, Jordan said.
“When I was at my worst, I truly wasn’t capable of hardly doing anything,” she said. “I couldn’t find a single moment of my day, even when I was lying down, that I wasn’t in a tremendous amount of pain.”
H.S. is now thought to be more common than psoriasis, said Dr. Alex Ortega Loayza, an Oregon Health & Science University dermatologist who is treating Jordan. He said the disease is basically an inflammatory condition of the sweat glands.
OHSU has seen a rapid rise in H.S. cases it is treating, Ortega said. Five years ago, it was around 100. Now more than 300 people are being treated.
“This is being recognized more than it has before,” he said. “I think, next year, it is going to be even more.”
While they don’t exactly know why the disease happens, Ortega said it is more common in smokers and people with obesity, diabetes and inflammatory bowel disease.
Jordan started feeling the effects of the condition at age 6, but wasn’t told she has H.S. until she was 22, she said. She dealt for years with chronic abscesses, open wounds and wounds that struggle to heal.
“It started to become a bigger part of my life at 11 or 12, that’s when we started looking for answers,” she said. “It took us 10 years to find them.”
Jordan heard from doctors who told her everything from they don’t know what is causing the marks on her skin to it’s happening because she might not bathe properly.
“There were a lot of shots in the dark about it being about things that are under my control,” she said. “There were doctors who told me it must be in my head.”
She was finally diagnosed with H.S. after a relative who is a nurse practitioner told Jordan to ask around. Not only was she diagnosed with the skin condition, she was told she also has polycystic ovary syndrome, which she thought could impact her ability to have children.
“For as sad a day as it was, it was also a happy day,” Jordan said. “The relief I felt by knowing was truly immense.”
They had to find a dermatologist who knew how to treat the condition. Jordan tried several different treatments, going through trial and error, she said.
One positive note came when Jordan was able to get pregnant. She gave birth to son Mason 19 months ago.
“We decided to file for adoption, and right before we filed the paperwork we found out I was pregnant,” she said. “I was very lucky.”
Jordan, a speech and language pathologist at area schools, had relatively limited symptoms from H.S. during her first two trimesters, but she developed a large open wound under her arm in the third trimester. She said it got worse through the pregnancy and after Mason was born.
“There were days I couldn’t watch him, there were days I couldn’t pick him up,” she said. “Things got really dark and really bad.”
Jordan had been seeing a doctor at OHSU. She decided to go see a specialist in San Francisco. The specialist recommended Ortega, another OHSU dermatologist.
Jordan started treatment with Ortega in January 2019.
“He was very willing and interested in trying treatments that were similar to what we were doing in San Francisco, but on more of an outpatient basis,” Jordan said of Ortega.
While she remains a stage III H.S. patient, the most severe designation, Jordan has seen improvement since seeing Ortega. Some of her wounds are closing.
“I still have a lot of bad days, but I have good days,” she said. “Things still get infected and that gets painful, but at least it’s better.”
Most importantly, she said she’s been able to be a better mother to Mason.
One of the most rewarding things about finding help has been knowing that it is not her fault, Jordan said.
“It is such a simple thing, but it gives you back a lot of power you lose to your body,” she said.
— Reporter: 541-548-2186, firstname.lastname@example.org