The Hidden, Common Disease You've Never Heard Of

June 2, 2020

In today’s informed and connected world, it’s hard to believe there might be common diseases that you have never heard of. Everyone knows about migraine, psoriasis, and erectile dysfunction, thanks to the numerous adds on TV for new treatments for these conditions. And if diagnosed with a type of cancer, an online search can tell you where to turn for treatment and advice. But what if you had a painful skin disease that takes up to a dozen years to diagnose and is difficult to say and spell? That’s a huge marketing obstacle.

Hidradenitis suppurativa (hid-rad-en-i-tis sup-ur-a-ti-va), abbreviated to HS, is a hidden disease that has been overlooked and underdiagnosed for too long. It is estimated that HS affects about 1% of the population, approximately 3 million people in the US. For comparison, psoriasis affects 2-3%. HS usually starts around puberty, and predominantly affects women and disproportionally those with skin of color. There is often a positive family history, although this also may not be disclosed due to the stigma and lack of diagnosis.

What are the symptoms of HS? It usually starts with a painful abscess (“boils”) in the armpit or groin, and over many months these may become recurrent and can lead to offensive-smelling suppurative (“pus-draining”) skin tunnels in these areas. This is not easy to talk about, and it is possible to keep hidden because of the location, but it takes a heavy toll: anxiety, depression, increased suicidality, chronic pain, loss of educational opportunity and work productivity. It can be associated with other comorbidities such as cardiac disease, metabolic syndrome, arthritis, and colitis.

We want to raise awareness of this disease so that people living with HS can get the treatment they need. Practitioners can utilize newly published North American management guidelines that summarize the published literature for treatment of HS. Collaborative care between dermatologists and surgeons is optimal, for both in-office procedures and surgical management for advanced disease. We also consider that early diagnosis and treatment is critical, and we would like to see HS being diagnosed when the symptoms start to prevent disease progression.

There is insufficient knowledge about what causes HS, but the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) recently announced an exciting funding opportunity specifically to study the mechanisms of HS. The Hidradenitis Suppurativa Foundation (HSF) offers small grants for pilot studies on HS. The translational research revolution is hopefully underway, to improve our understanding of the causes of HS that will lead to development of novel rational therapeutics for HS.

As board members of the non-profit Hidradenitis Suppurativa Foundation (HSF), our mission is to improve the lives of people living with HS through advocacy, education, and research, and our vision is a world where no one suffers from HS. Help us to shed light on this debilitating disease by spreading the word about hidradenitis suppurativa.