Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
KevinMD
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
  • 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
KevinMD
  • 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
  • About KevinMD | Kevin Pho, MD
  • Be heard on social media’s leading physician voice
  • Contact Kevin
  • Discounted enhanced author page
  • DMCA Policy
  • Establishing, Managing, and Protecting Your Online Reputation: A Social Media Guide for Physicians and Medical Practices
  • Group vs. individual disability insurance for doctors: pros and cons
  • KevinMD influencer opportunities
  • Opinion and commentary by KevinMD
  • Physician burnout speakers to keynote your conference
  • Physician Coaching by KevinMD
  • Physician keynote speaker: Kevin Pho, MD
  • Physician Speaking by KevinMD: a boutique speakers bureau
  • Primary care physician in Nashua, NH | Doctor accepting new patients
  • Privacy Policy
  • Recommended services by KevinMD
  • Terms of Use Agreement
  • Thank you for subscribing to KevinMD
  • Thank you for upgrading to the KevinMD enhanced author page
  • The biggest mistake doctors make when purchasing disability insurance
  • The doctor’s guide to disability insurance: short-term vs. long-term
  • The KevinMD ToolKit
  • Upgrade to the KevinMD enhanced author page
  • Why own-occupation disability insurance is a must for doctors

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

< 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

  • The healing power of physician presence in modern medicine

    Farid Sabet-Sharghi, MD
  • ATTR-CM screening: the missing link in heart failure diagnosis

    Radhesh K. Gupta
  • When the doctor becomes the patient: a breast cancer journey

    Amy E. Sanders, MD
  • Menstrual health in medicine: Addressing the gender gap in care

    Cynthia Kumaran
  • Mobile wound care in 2026: Navigating regulatory pressures

    John F. Curtis IV, MD
  • Why smaller hospitals may be faster for cancer diagnosis

    Gerald Kuo
  • Most Popular

  • Past Week

    • Missed diagnosis visceral leishmaniasis: a tragedy of note bloat

      Arthur Lazarus, MD, MBA | Conditions
    • Sabbaticals provide a critical lifeline for sustainable medical careers [PODCAST]

      The Podcast by KevinMD | Podcast
    • Why Medicare must cover atrial fibrillation screening to prevent strokes

      Radhesh K. Gupta | Conditions
    • Menstrual health in medicine: Addressing the gender gap in care

      Cynthia Kumaran | Conditions
    • Ambiguous billing rules threaten every doctor in practice [PODCAST]

      The Podcast by KevinMD | Podcast
    • Medical bankruptcy: the hidden cost of U.S. health care

      Richard A. Lawhern, PhD | Conditions
  • Past 6 Months

    • Missed diagnosis visceral leishmaniasis: a tragedy of note bloat

      Arthur Lazarus, MD, MBA | Conditions
    • Alex Pretti: a physician’s open letter defending his legacy

      Mousson Berrouet, DO | Physician
    • Health care as a human right vs. commodity: Resolving the paradox

      Timothy Lesaca, MD | Physician
    • The American Board of Internal Medicine maintenance of certification lawsuit: What physicians need to know

      Brian Hudes, MD | Physician
    • Why voicemail in outpatient care is failing patients and staff

      Dan Ouellet | Tech
    • AI-enabled clinical data abstraction: a nurse’s perspective

      Pamela Ashenfelter, RN | Tech
  • Recent Posts

    • Ambiguous billing rules threaten every doctor in practice [PODCAST]

      The Podcast by KevinMD | Podcast
    • Deprescribing in health care: Why less medication can be more

      American Medical Association & John Whyte, MD, MPH | Meds
    • What the folinic acid retraction means for autism treatment

      Timothy Lesaca, MD | Physician
    • Value-based care data gap: Why metrics fail to reach the bedside

      Ido Zamberg, MD | Policy
    • The pause medicine never taught us to take

      Mary Wilde, MD | Physician
    • The healing power of physician presence in modern medicine

      Farid Sabet-Sharghi, MD | Conditions

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

    • Missed diagnosis visceral leishmaniasis: a tragedy of note bloat

      Arthur Lazarus, MD, MBA | Conditions
    • Sabbaticals provide a critical lifeline for sustainable medical careers [PODCAST]

      The Podcast by KevinMD | Podcast
    • Why Medicare must cover atrial fibrillation screening to prevent strokes

      Radhesh K. Gupta | Conditions
    • Menstrual health in medicine: Addressing the gender gap in care

      Cynthia Kumaran | Conditions
    • Ambiguous billing rules threaten every doctor in practice [PODCAST]

      The Podcast by KevinMD | Podcast
    • Medical bankruptcy: the hidden cost of U.S. health care

      Richard A. Lawhern, PhD | Conditions
  • Past 6 Months

    • Missed diagnosis visceral leishmaniasis: a tragedy of note bloat

      Arthur Lazarus, MD, MBA | Conditions
    • Alex Pretti: a physician’s open letter defending his legacy

      Mousson Berrouet, DO | Physician
    • Health care as a human right vs. commodity: Resolving the paradox

      Timothy Lesaca, MD | Physician
    • The American Board of Internal Medicine maintenance of certification lawsuit: What physicians need to know

      Brian Hudes, MD | Physician
    • Why voicemail in outpatient care is failing patients and staff

      Dan Ouellet | Tech
    • AI-enabled clinical data abstraction: a nurse’s perspective

      Pamela Ashenfelter, RN | Tech
  • Recent Posts

    • Ambiguous billing rules threaten every doctor in practice [PODCAST]

      The Podcast by KevinMD | Podcast
    • Deprescribing in health care: Why less medication can be more

      American Medical Association & John Whyte, MD, MPH | Meds
    • What the folinic acid retraction means for autism treatment

      Timothy Lesaca, MD | Physician
    • Value-based care data gap: Why metrics fail to reach the bedside

      Ido Zamberg, MD | Policy
    • The pause medicine never taught us to take

      Mary Wilde, MD | Physician
    • The healing power of physician presence in modern medicine

      Farid Sabet-Sharghi, MD | Conditions

MedPage Today Professional

An Everyday Health Property Medpage Today

Copyright © 2026 KevinMD.com | Powered by Astra WordPress Theme

  • 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...