Hidradenitis Suppurativa (HS) is a chronic, inflammatory skin disease that often goes unrecognised or misdiagnosed. Characterised by painful lumps, abscesses, and tunnels under the skin, HS primarily affects areas where skin rubs together, such as the armpits, groin, buttocks, and under the breasts. Despite its prevalence, HS remains underdiagnosed and misunderstood, leading to significant physical and emotional distress for those affected.
What Is Hidradenitis Suppurativa?
HS is a long-term skin condition that occurs when hair follicles and sweat glands become blocked and inflamed. This blockage leads to the formation of painful lumps, abscesses, and tunnels under the skin. Over time, these lesions can become infected, rupture, and cause scarring. The exact cause of HS is not fully understood, but it is believed to involve a combination of genetic, environmental, and lifestyle factors.
How Common Is Hidradenitis Suppurativa?
HS affects approximately 1-2% of the global population, with higher prevalence rates observed among Black and biracial individuals. Despite its prevalence, HS is often underrecognized and misdiagnosed, leading to delays in appropriate treatment. A study published in the British Journal of Dermatology found that the average diagnostic delay for HS is 7.2 years, with many patients consulting multiple healthcare providers before receiving a correct diagnosis.
The Pain of Hidradenitis Suppurativa
Pain is one of the most debilitating aspects of HS. A cross-sectional study involving 1,795 patients revealed that 83.6% reported pain in the last 24 hours. The severity of pain varied, with 77.6% experiencing mild pain, 15.9% moderate pain, and 6.5% severe pain. Women and smokers tended to report higher pain levels. Pain intensity also correlated with disease severity, with the most severe pain observed in patients with advanced stages of HS.
Misdiagnosis and Diagnostic Delays
HS is frequently misdiagnosed as other skin conditions, such as acne, folliculitis, or boils. This misdiagnosis often leads to inappropriate treatments and prolonged suffering. The British Journal of Dermatology study highlighted that 73.3% of HS patients experienced a significant diagnostic delay of more than two years. Factors contributing to these delays include a lack of awareness among both patients and healthcare providers, as well as the tendency of patients to self-manage symptoms without seeking medical advice.
Stages of Hidradenitis Suppurativa
HS progresses through stages, each with distinct characteristics:
- Stage I: Single or multiple isolated lumps without sinus tracts or scarring.
- Stage II: Recurrent abscesses with sinus tracts and scarring.
- Stage III: Diffuse involvement or multiple interconnected sinus tracts and abscesses across an entire area.
Early diagnosis and treatment are crucial to prevent progression to more severe stages.
Treatment Options
While there is no cure for HS, various treatments can help manage symptoms:
- Topical Treatments: Antibiotics and antiseptic washes can reduce inflammation and prevent infection.
- Oral Medications: Antibiotics, corticosteroids, and immunosuppressive drugs may be prescribed for more severe cases.
- Biologic Therapies: Medications that target specific immune system components can be effective for moderate to severe HS.
- Surgical Interventions: In cases of severe scarring or recurrent abscesses, surgical procedures may be necessary to remove affected tissue.
A recent study suggested that medications like Ozempic, traditionally used for weight management, may also help reduce HS flare-ups, particularly in patients with obesity.
Lifestyle and Home Care
Managing HS involves lifestyle modifications and home care strategies:
- Hygiene: Regular cleansing with gentle, non-irritating products can help keep the skin clean and reduce flare-ups.
- Clothing: Wearing loose-fitting, breathable fabrics can minimise friction and sweating.
- Diet: Some patients find that certain dietary changes, such as reducing dairy or high-glycemic foods, may help manage symptoms.
- Stress Management: Stress can exacerbate HS, so incorporating relaxation techniques like meditation or yoga may be beneficial.
The Emotional Impact
HS can significantly affect a person’s quality of life, leading to emotional distress, social isolation, and depression. The visible nature of the condition and its chronic pain can impact self-esteem and relationships. Support groups and counselling can provide emotional support and coping strategies for individuals with HS.
For instance, research indicates that individuals with HS experience higher levels of psychological distress compared to the general population. A study assessing 94 patients with HS found that the anxiety scores averaged 6.41, significantly higher than the control group’s 5.00.
Raising Awareness
Increasing awareness about HS among the public and healthcare providers is essential for early diagnosis and effective management. Educational campaigns, improved training for healthcare professionals, and open discussions can help reduce the stigma associated with the condition and encourage individuals to seek timely medical advice.
Living with HS: Real-Life Stories
Comprehensive Approach To Symptom Management
Reddit User Suzanne says that keeping a diary can be a valuable tool for individuals with Hidradenitis Suppurativa (HS), as it can help identify personal triggers that may lead to flare-ups. Since triggers vary from person to person, ranging from stress and diet (such as gluten or nightshades) to environmental factors like heat, tracking symptoms alongside daily habits can reveal useful patterns.
No Dairy Diet
Another Reddit User with HS found that eliminating dairy made a significant difference in managing their flare-ups. Although they were mostly dairy-free, a period of increased cow’s milk intake due to other health issues coincided with their worst-ever flare-up phase, requiring constant antibiotics and causing severe discomfort. After cutting out all milk, including for diabetic hypo recovery, their major flare-ups stopped, though the condition has not completely disappeared.
Tara’s Story of Living With HS
You can also check out this highly personal and deeply insightful video of Tara’s journey and life with HS.
Hidradenitis Suppurativa: An Elusive Condition That Needs More Awareness
Hidradenitis Suppurativa is a painful and often misunderstood skin condition that requires greater awareness and understanding. With appropriate treatment and support, individuals with HS can manage their symptoms and lead fulfilling lives. If you or someone you know is experiencing symptoms of HS, consult a healthcare provider for evaluation and management options.
References
National Library Of Medicine (PMC9987236)
Self.com
National Library Of Medicine (PMC9309859)
Health.com
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