Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

Why does it take 10 years to diagnose this common disease?

Christopher Sayed, MD
Conditions
November 15, 2022
Share
Tweet
Share

Every day, patients with the same story walk into my office. Young people in their teens, 20s or 30s are exasperated and seeking help for constant painful boils that drain the pus in underarms, groin, and around breasts — a condition called hidradenitis suppurativa (HS). This disease often makes their lives a nightmare. Despite being a more common condition than once thought, many patients see providers for 7 to 10 years without a diagnosis or appropriate treatment.

I’ve studied HS for most of my career, and I see over 150 patients with it every month. It is a chronic skin disease that is common enough that most of us know someone with HS. It begs the question: for such a common and terrible disease, why is it not as familiar to all of us as other chronic conditions like rheumatoid arthritis, which affects a similar percentage of the population?

The answer lies between who is impacted by HS and the historical absence of research and funding, lack of medical education, and stigma resulting in low public awareness.

Research shows that HS is three times more prevalent in Black Americans than white Americans, and 75 percent of new diagnoses are among women. Such a diagnosis — and the time to get there — can be isolating as patients feel stigmatized, withdrawn from social interactions, and unable to keep up with work and school responsibilities.

Moreover, in the process of being treated, many patients are inappropriately told that poor hygiene, smoking, or body size is to blame for these symptoms. Without a correct diagnosis and treatment, many patients undergo repeated painful procedures in urgent cares and emergency rooms to drain abscesses.

As a medical community, we must educate ourselves better and bring public attention to chronic conditions that have a long history of being neglected. In particular, conditions like HS, keloid scars, and endometriosis that disproportionately affect women and people of color have suffered from a lack of research funding and treatment availability.

A delayed HS diagnosis is often due to the condition not being well-known within the medical community. In fact, many doctors lack education or training on how to treat the condition. Many patients I see firsthand have a severe and long-standing disease that has led to progressive disfigurement and disability due to years of being undertreated or not treated at all.

To address this, medical schools across the U.S. must educate students about diseases like HS that have been historically neglected. Nine years ago, I assumed responsibility for the dermatology curriculum for our medical students that spent more than 30 minutes lecturing on topics like acne and psoriasis, but HS was never mentioned until I made a specific effort to include it. Some students may have encountered it by chance during later years of training, but those may have been cases where the diagnosis was not recognized, and myths were perpetuated. Those teaching at medical schools must ensure topics are inclusive and focus on areas where gaps in current medical understanding exist.

The final part of the equation relies on increased patient engagement through public awareness of HS and supporting patients with the tools to advocate for themselves. Non-profit support groups, advocacy organizations, new research, and stories like these can help increase awareness of stigmatized conditions so that patients do not have to suffer in silence. Once patients understand their condition, they can educate their health care providers on what support and care they need.

Many of us sought out a medical career to tackle complex health issues and care for the patients who need us the most. Identifying areas of need and historical neglect is critical to delivering the care that our patients deserve.

Christopher Sayed is a dermatologist.

Image credit: Shutterstock.com

Prev

Keeping rural hospitals in the game [PODCAST]

November 14, 2022 Kevin 0
…
Next

Be a shining example for your weight loss patients

November 15, 2022 Kevin 0
…

ADVERTISEMENT

Tagged as: Dermatology

Post navigation

< Previous Post
Keeping rural hospitals in the game [PODCAST]
Next Post >
Be a shining example for your weight loss patients

ADVERTISEMENT

Related Posts

  • Gun violence is our society’s disease

    Leslie Mattson, MD
  • The culture of perfection in medicine is a disease

    Andy Cruz, MD
  • Chronic disease is making medical education worse

    Jason J. Han, MD
  • A case for national health insurance

    Jonathan Michels
  • The evolution of medical training in dermatology and the impact of technology

    Peter Lio, MD
  • Expanding health care access and equity through telehealth

    Gjanje L. Smith, MD, MPH, Wanneh A. Dixon, and Maria Phillips, JD

More in Conditions

  • How a pregnancy test on a male patient revealed health care flaws

    Eric Goldfarb
  • Beyond burnout: the rise of the optimized, dissociated executive

    Jenny Shields, PhD
  • How fNIRS and light therapy are shaping precision psychiatry

    Muhamad Aly Rifai, MD
  • The emotional labor of volunteering in an aging society

    Gerald Kuo
  • Understanding the evolutionary mismatch in health and modern disease

    Max Goodman, MD
  • Why Brooklyn’s aging population needs more vascular health specialists

    Anil Hingorani, MD
  • Most Popular

  • Past Week

    • Will AI replace primary care physicians?

      P. Dileep Kumar, MD, MBA | Tech
    • Why the U.S. health care system is failing patients and physicians

      John C. Hagan III, MD | Policy
    • Putting health back into insurance: the case for tobacco cessation

      Edward Anselm, MD | Policy
    • What is the minority tax in medicine?

      Tharini Nagarkar and Maranda C. Ward, EdD, MPH | Education
    • Why every physician needs a sabbatical (and how to take one)

      Christie Mulholland, MD | Physician
    • Retail health care vs. employer DPC: Preparing for 2026 policy shifts

      Dana Y. Lujan, MBA | Policy
  • Past 6 Months

    • Why patient trust in physicians is declining

      Mansi Kotwal, MD, MPH | Physician
    • How environmental justice and health disparities connect to climate change

      Kaitlynn Esemaya, Alexis Thompson, Annique McLune, and Anamaria Ancheta | Policy
    • Will AI replace primary care physicians?

      P. Dileep Kumar, MD, MBA | Tech
    • A physician father on the Dobbs decision and reproductive rights

      Travis Walker, MD, MPH | Physician
    • The blind men and the elephant: a parable for modern pain management

      Richard A. Lawhern, PhD | Conditions
    • Is tramadol really ineffective and risky?

      John A. Bumpus, PhD | Meds
  • Recent Posts

    • Genetic testing requires more than just a binary result [PODCAST]

      The Podcast by KevinMD | Podcast
    • How a pregnancy test on a male patient revealed health care flaws

      Eric Goldfarb | Conditions
    • Beyond burnout: the rise of the optimized, dissociated executive

      Jenny Shields, PhD | Conditions
    • How system strain contributes to medical gaslighting in health care

      Alan P. Feren, MD | Physician
    • Black women’s health resilience: the hidden cost of “pushing through”

      Latesha K. Harris, PhD, RN | Policy
    • Why tele-critical care fails the sickest ICU patients

      Keith Corl, MD | Physician

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

View 1 Comments >

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

ADVERTISEMENT

ADVERTISEMENT

  • Most Popular

  • Past Week

    • Will AI replace primary care physicians?

      P. Dileep Kumar, MD, MBA | Tech
    • Why the U.S. health care system is failing patients and physicians

      John C. Hagan III, MD | Policy
    • Putting health back into insurance: the case for tobacco cessation

      Edward Anselm, MD | Policy
    • What is the minority tax in medicine?

      Tharini Nagarkar and Maranda C. Ward, EdD, MPH | Education
    • Why every physician needs a sabbatical (and how to take one)

      Christie Mulholland, MD | Physician
    • Retail health care vs. employer DPC: Preparing for 2026 policy shifts

      Dana Y. Lujan, MBA | Policy
  • Past 6 Months

    • Why patient trust in physicians is declining

      Mansi Kotwal, MD, MPH | Physician
    • How environmental justice and health disparities connect to climate change

      Kaitlynn Esemaya, Alexis Thompson, Annique McLune, and Anamaria Ancheta | Policy
    • Will AI replace primary care physicians?

      P. Dileep Kumar, MD, MBA | Tech
    • A physician father on the Dobbs decision and reproductive rights

      Travis Walker, MD, MPH | Physician
    • The blind men and the elephant: a parable for modern pain management

      Richard A. Lawhern, PhD | Conditions
    • Is tramadol really ineffective and risky?

      John A. Bumpus, PhD | Meds
  • Recent Posts

    • Genetic testing requires more than just a binary result [PODCAST]

      The Podcast by KevinMD | Podcast
    • How a pregnancy test on a male patient revealed health care flaws

      Eric Goldfarb | Conditions
    • Beyond burnout: the rise of the optimized, dissociated executive

      Jenny Shields, PhD | Conditions
    • How system strain contributes to medical gaslighting in health care

      Alan P. Feren, MD | Physician
    • Black women’s health resilience: the hidden cost of “pushing through”

      Latesha K. Harris, PhD, RN | Policy
    • Why tele-critical care fails the sickest ICU patients

      Keith Corl, MD | Physician

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

Why does it take 10 years to diagnose this common disease?
1 comments

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...