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
43 Shares
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 Such a diagnosis — and the time to get there — can be isolating as patients feel stigmatized, withdrawn from social interactions, and unable to keep up with work and school responsibilities.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
…

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

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

  • Overcoming Parkinson’s: a journey of laughter and resilience

    Cynthia Poire Mathews, FNP
  • The untold struggles patients face with resident doctors

    Denise Reich
  • Maximize sleep efficiency with stimulus control

    Pedram Navab, DO
  • The endless waves of chronic illness

    Michele Luckenbaugh
  • Surviving and thriving after life’s most difficult moments

    Rebecca Fogg, MBA
  • The surprising power of Play-Doh in pediatric care: How it’s bringing families together

    Alexander Rakowsky, MD
  • Most Popular

  • Past Week

    • The real cause of America’s opioid crisis: Doctors are not to blame

      Richard A. Lawhern, PhD | Meds
    • It’s time for C-suite to contract directly with physicians for part-time work

      Aaron Morgenstein, MD & Corinne Sundar Rao, MD | Physician
    • What is driving physicians to the edge of despair?

      Edward T. Creagan, MD | Physician
    • The untold struggles patients face with resident doctors

      Denise Reich | Conditions
    • The psychoanalytic hammer: lessons in listening and patient-centered care

      Greg Smith, MD | Conditions
    • 10 commandments of ethical affiliate marketing for physicians

      Aaron Morgenstein, MD & Amy Bissada, DO | Finance
  • Past 6 Months

    • The real cause of America’s opioid crisis: Doctors are not to blame

      Richard A. Lawhern, PhD | Meds
    • Nobody wants this job. Should physicians stick around?

      Katie Klingberg, MD | Physician
    • The vital importance of climate change education in medical schools

      Helen Kim, MD | Policy
    • The fight for reproductive health: Why medication abortion matters

      Catherine Hennessey, MD | Physician
    • It’s time for C-suite to contract directly with physicians for part-time work

      Aaron Morgenstein, MD & Corinne Sundar Rao, MD | Physician
    • Resetting the doctor-patient relationship: Navigating the challenges of modern primary care

      Jeffrey H. Millstein, MD | Physician
  • Recent Posts

    • 10 commandments of ethical affiliate marketing for physicians

      Aaron Morgenstein, MD & Amy Bissada, DO | Finance
    • The heart of a Desi doctor: Balancing emotions and resources in oncology

      Dr. Damane Zehra | Physician
    • Safe sex for seniors: Dispelling myths and embracing safe practices [PODCAST]

      The Podcast by KevinMD | Podcast
    • Overcoming Parkinson’s: a journey of laughter and resilience

      Cynthia Poire Mathews, FNP | Conditions
    • The untold struggles patients face with resident doctors

      Denise Reich | Conditions
    • Maximize sleep efficiency with stimulus control

      Pedram Navab, DO | 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

CME Spotlights

From MedPage Today

Latest News

  • Four-Year-Old Gets Hospital Bill; Woolly Mammoth Meatball; How AR-15s Damage Humans
  • How This Doctor Found Purpose After a Devastating Injury
  • House Lawmakers Squabble Over HHS Budget
  • Infant Formula Crisis Exposed FDA and Industry Failings, Lawmakers Say
  • Building Vaccine Trust Among the General Public

Meeting Coverage

  • Phase III Trials 'Hit a Home Run' in Advanced Endometrial Cancer
  • Cannabis Use Common in Post-Surgery Patients on Opioid Tapering
  • Less Abuse With Extended-Release Oxycodone, Poison Center Data Suggest
  • Novel Strategies Show Winning Potential in Ovarian Cancer
  • Children Do Well With Fewer Opiates After Surgery
  • Most Popular

  • Past Week

    • The real cause of America’s opioid crisis: Doctors are not to blame

      Richard A. Lawhern, PhD | Meds
    • It’s time for C-suite to contract directly with physicians for part-time work

      Aaron Morgenstein, MD & Corinne Sundar Rao, MD | Physician
    • What is driving physicians to the edge of despair?

      Edward T. Creagan, MD | Physician
    • The untold struggles patients face with resident doctors

      Denise Reich | Conditions
    • The psychoanalytic hammer: lessons in listening and patient-centered care

      Greg Smith, MD | Conditions
    • 10 commandments of ethical affiliate marketing for physicians

      Aaron Morgenstein, MD & Amy Bissada, DO | Finance
  • Past 6 Months

    • The real cause of America’s opioid crisis: Doctors are not to blame

      Richard A. Lawhern, PhD | Meds
    • Nobody wants this job. Should physicians stick around?

      Katie Klingberg, MD | Physician
    • The vital importance of climate change education in medical schools

      Helen Kim, MD | Policy
    • The fight for reproductive health: Why medication abortion matters

      Catherine Hennessey, MD | Physician
    • It’s time for C-suite to contract directly with physicians for part-time work

      Aaron Morgenstein, MD & Corinne Sundar Rao, MD | Physician
    • Resetting the doctor-patient relationship: Navigating the challenges of modern primary care

      Jeffrey H. Millstein, MD | Physician
  • Recent Posts

    • 10 commandments of ethical affiliate marketing for physicians

      Aaron Morgenstein, MD & Amy Bissada, DO | Finance
    • The heart of a Desi doctor: Balancing emotions and resources in oncology

      Dr. Damane Zehra | Physician
    • Safe sex for seniors: Dispelling myths and embracing safe practices [PODCAST]

      The Podcast by KevinMD | Podcast
    • Overcoming Parkinson’s: a journey of laughter and resilience

      Cynthia Poire Mathews, FNP | Conditions
    • The untold struggles patients face with resident doctors

      Denise Reich | Conditions
    • Maximize sleep efficiency with stimulus control

      Pedram Navab, DO | Conditions

MedPage Today Professional

An Everyday Health Property Medpage Today iMedicalApps
  • 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...