By Dr Ayman Alnaeem,
Vice President of Emirates Dermatology Society
Vice President of Emirates Dermatology Society
Around the world, 1 in 100 individuals suffer from Hidradenitis Suppurativa (HS). Characterized by painful, swollen lumps and nodules that can develop under the skin in the armpits, groin, and other areas of the body, HS is a deeply debilitating condition. It can also profoundly impact a patient’s self-esteem and mental wellbeing. There is no cure for HS, but there are ways to manage the condition.
Over time, the lumps caused by HS develop into larger, painful abscesses or boils, which are filled with pus. These abscesses can rupture, leading to the discharge of foul-smelling fluid. As the condition progresses, HS can lead to the formation of thick, rope-like scars (keloids) in the affected areas. This often leads patients to feel embarrassed, ashamed, and stigmatized by their appearance, leading to a withdrawal from social activities and decreased confidence in forming relationships.
Hidradenitis Suppurativa often misdiagnosed
One of the most alarming aspects of HS is the lengthy delay in diagnosing the condition worldwide. Many patients suffer silently for years before receiving an accurate diagnosis and appropriate treatment. What complicates matters further is that HS is often misdiagnosed as another skin condition, such as acne or eczema. This can lead to a long period of uncertainty and frustration.
One study found that patients, on average, waited up to 10 years from when their symptoms first manifested to when they received an accurate diagnosis. In the Asia Pacific, Middle East, and Africa (APMA) region, an estimated 80% of people affected still await a proper diagnosis for HS. During this time, they would have endured immense physical and emotional pain. In fact, studies have also shown that the constant pain, fear of flare-ups, and feelings of isolation take a significant toll on a patient’s mental health.
Living with Hidradenitis Suppurativa
Over the past few years, there has been a growing awareness of the mental health challenges faced by people living with HS. However, there is still much work to be done. It is estimated that one in four adults with HS suffers from depression and one out of five patients has anxiety. The burden of living with a chronic and unpredictable condition can lead to a sense of hopelessness, affecting not only the patients, but also their families and loved ones who witness their struggles.
Social isolation is another pressing issue that affects HS patients. The fear of judgment and ridicule often leads to patients avoiding social gatherings, sports, and pursuing intimate relationships. As a result, many patients experience feelings of loneliness and detachment, which can exacerbate their mental health challenges.
To minimize the emotional impact of HS, early detection and timely intervention are vital. Fostering an open and non-judgmental environment in medical settings can encourage patients to discuss their emotional struggles and seek mental health support when needed. Awareness campaigns that unite healthcare professionals and patient support groups also play a key role in offering a sense of community and belonging for HS patients.
Shining a light on Hidradenitis Suppurativa
A wonderful example of this is the “Shine a Light on HS” initiative by Novartis and the Emirates Dermatology Society. This initiative will establish scientific, educational platforms targeting dermatologists and patients in the UAE, fostering a deeper understanding of HS. By combining resources and expertise, both organizations will capture and generate local data on HS through Real World Evidence (RWE), empowering the medical community to make evidence-based decisions.
Furthermore, widescale educational initiatives and platforms will be launched to raise awareness and promote understanding of HS among the general public.
Together, we must break the silence surrounding the social and emotional impact of HS, raise awareness, and provide a supportive and understanding community for those living with this challenging condition. Only through collaboration and compassion can we help HS patients live fulfilling lives free from shame and stigma.
