Hidradenitis suppurativa is a chronic and painful skin condition, which causes painful bumps and sores that can be debilitating for the 3.5 million people with the diagnosis in the U.S.
The condition can prompt painful boils to show up in sensitive areas — such as the underarms, groin area, under breasts and even on the chest and back.
“It is unpredictable and often isolating,” said Dr. Adam Friedman, professor and chair of dermatology at George Washington University’s School of Medicine and Health Sciences.
Unfortunately, according to Friedman, many people with the diagnosis do not know about the treatment options available to them. He found 18% of those surveyed were unhappy with how their doctor was administering treatment.
Friedman’s study, which involved surveying 500 people with the illness, found that 75% of sufferers didn’t even realize there is now medicine — Cosentyx (secukinumab) — that’s been approved by the Food and Drug Administration for treating the condition.
“That’s not just a stat(istic), it’s a call to action. We collectively need to do better with our management of hidradenitis suppurativa,” Friedman said.
Making matters more complicated, the condition can also be slow in getting diagnosed.
“The delay from onset to the time when it’s actually diagnosed is 7 to 10 years, which is unacceptable,” Friedman said.
The study found that one reason for the delay in a diagnosis may be that people are being seen by non-dermatology doctors who do not recognize the condition.
Friedman said the findings show more needs to be done to educate not only the public, but also physicians about the condition because for many, it can truly take away quality of life.
“I’ve had patients tell me they can’t even sit and drive in a car or raise their hand in class to answer a question or even shake hands. Therefore, getting this under control with FDA-approved treatments is of the utmost importance to prevent the long-term impact of this condition,” he said.
Also discovered, according to Friedman, is that more than 70% of patients said having a medication for treating the illness gave them more confidence in the future when it comes to therapies that will be able to help them live a more normal life.
“We need to build on it and get more things out there for these patients,” Friedman said.