Dermatologists dedicated to hidradenitis suppurativa research

Hidradenitis Suppurativa is a painful skin disease that can cause bumps, boils and draining tunnels. There’s no cure and specialty care is relatively new.

Published September 18, 2019 / All Stories

Christos C. Zouboulis, M.D., Ph.D. and Afsaneh Alavi MD, MSc, FRCPC have dedicated much of their dermatology practice and research to better understanding this inflammatory skin disease. The two experts share what they’ve learned through their experience with patients and how it can help other dermatologists’ relationships with patients.

Why are you so passionate about skin diseases and skin health?

Afsaneh Alavi MD, MSc, FRCPC: Dermatology covers a wide variety of conditions and many internal diseases have skin manifestations. For me, the illness is so visible and clear for the patient compared to other areas of medicine.

Christos C. Zouboulis, M.D., Ph.D.: I really liked photography when I was younger. There’s something about what you see in front of you that I find intriguing and dermatology brings that optical element into play. Additionally, in dermatology the patient is somewhat in control. They can see whether they’re doing better. It’s not just about lab work and tests, but about what they’re skin looks like and how it feels.

How has the approach to hidradenitis suppurativa treatment evolved since you started seeing patients?

Alavi: What I’ve learned from treating patients in Canada is that many of them need surgery, but it’s because we often act too late and they experience tissue destruction. That’s not reversible. Today, I know we have better outcome if we act early.

Zouboulis: In 2006, HS wasn’t even recognized. We only had a couple of specialists then. Today, research has shown us we have more options. Because of our new understanding, doctors don’t have to wait for surgical intervention, they have options to help patients manage HS early. We are optimistic because we’re finally diagnosing the patient in three years in Germany; A few years ago it used to be an average of 12 years diagnosis delay.

It sounds like there is improvement, but why is there still a delay to diagnose?

Zouboulis: Every doctor wants to treat properly, but the patients aren’t getting to a specialist or even a dermatologist quickly enough. I see patients going to a general practitioner first, who may not understand how serious the bumps can be. We want to educate the general practitioner at the bedside, so they know what the diagnostic criteria are and get the patient to a specialized dermatologist as soon as possible.

Alavi: I think patients with HS are different than patients with other conditions. They’re so involved with their care and they work extremely hard to find answers and seek help, but they are still falling through the cracks. So, the gap I see is with getting the patient to the specialist earlier or even simply getting the patient in to see a physician. The access to care is one reason for delay in HS diagnosis but also there are other factors such as stigma. There is still a stigma with the disease. If a young teenager gets a boil, the tendency can be to hide it. We are dealing with another challenge which is providing the right care. We have come a long way but still there is room for improvement by raising awareness.

Tell us about what you’re doing to change patient care.

Alavi: When I first started seeing HS patients, it was through a wound clinic. The patient care was fragmented because these patients need multidisciplinary care. When you refer patients to a pain specialist who is not seeing many HS patients, then there are limitations with the care that can be offered for a young patient with a skin condition.

Along with several colleagues, we started a HS clinic. Here we make the work to treat patients easier for everyone. My surgery colleague and I are always present in each HS clinic. A group of colleagues receives our referrals, and they are getting more and more familiar with the patients with HS. We created our own network of interdisciplinary care. Our communication is better because we’re present at the same time and we’re working toward the same goal and a more aligned approach. We’ve found patients have more trust in us. We also have a nurse who helps us with patient education, wound care and completing forms.

Zouboulis: I’m continuing to collaborate with dermatologists across Europe through the European Hidradenitis Suppurativa Foundation and the European Union Network for Rare and Complex Skin Diseases. We have developed the European registry for HS where physicians can register patients, determine the severity of the disease, and support the study and surveillance of HS. And we exchange our experience and provide quick advice through an online data-secured EU platform in difficult cases. These are major advantages that make the physicians’ work on HS in Europe so pioneering.

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