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Living with a rare skin condition

Hidradenitis Suppurativa remains an underreported, debilitating disease

When she was just four, Sara, now a working professional aged 25 years, noticed some abscesses on her hair follicles. These subsequently reappeared when she was 12 and 14.

“Over the course of 10 years, I consulted with 15 healthcare professionals and underwent various treatments - none of which seemed to provide a lasting solution. The misdiagnoses during this period added to the complexity of managing the condition,” Sara says.

Eventually, she found a dermatologist who correctly identified the disease as Hidradenitis Suppurativa (HS), a chronic inflammatory skin condition. “Throughout my school years, HS had a significant impact on my life, causing embarrassment and affecting my ability to attend school regularly,” she adds.

HS affects the apocrine sweat glands, which are found in areas with hair follicles. HS is characterised by the formation of painful, deep-seated boils or abscesses, 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 stigmatised by their appearance, leading to a withdrawal from social activities and decreased confidence in forming relationships,” Dr Hussein Abdel Dayem, Dermatologist at Mediclinic Al Noor Hospital, said.

Currently, HS affects an estimated 1 in 100 individuals worldwide. In the Asia Pacific, Middle East, and Africa (APMA) region, an estimated 80 per cent of people affected still await a proper diagnosis. “However, due to limited awareness and understanding of HS, its true global and regional prevalence still needs to be determined. Some of the factors that may contribute to HS include family history of HS, obesity, smoking, certain medical conditions, such as polycystic ovary syndrome (PCOS) and acne, and friction or irritation of the affected skin areas,” Dr Abdel Dayem said.

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, experts say.

Sara says while the relief of finally having a clear diagnosis was substantial, but the impact of the condition on her life persisted. “I still face challenges during flare-ups, which occasionally lead to abscesses bursting in public or at work. This has resulted in missed days at work and moments of embarrassment that continue to be part of my experience with HS,” she says.

The exact reason for the blockage of hair follicles that leads to HS is unknown, but it is believed to be caused by a combination of factors such as variations in hormone, genetics, smoking, overweight, and tight clothing with non-breathable material. “If left untreated, the complications of HS may include infection, scarring, restricted and painful movement, swelling of the arms, legs, or genitals, and social isolation due to discharge and body odour. To prevent HS, it is recommended to reduce weight, wear loose outfits, avoid smoking, minimise damage to the boils, maintain hygiene, and avoid skin contact with chemicals, fragrances, and dyes,” Dr Abdel Dayem said.

A HS diagnosis involves several key components. First, a dermatologist will conduct a comprehensive clinical examination, where the doctor will scrutinise the affected areas, identify characteristic signs such as recurrent painful bumps, abscesses, and tunnels beneath the skin, and get familiar with the patient’s medical history. To ensure accuracy, healthcare providers will use tests or examinations to rule out other skin conditions that share symptoms with HS. “In certain instances, doctors utilise the Hurley staging system, categorising HS into three stages based on symptom severity, aiding in treatment decision-making. Additionally, a biopsy may be conducted if the diagnosis is unclear or to eliminate other potential conditions, Dr Abdel Dayem said.

Novartis and the Emirates Dermatology Society recently launched the “Shine a Light on HS” initiative. “By working together in the identification of the disease, its management and data collection in the UAE, the collaboration will go a long way in raising awareness of the condition and delivering critical insights to help healthcare providers and policymakers to support patients affected by this debilitating disease,” Dr Abdel Dayem said.

Currently, under the care of her dermatologist, Sara is navigating the management of HS, utilising a combination of treatments to control the symptoms. “Despite the controlled status of the disease, the emotional and physical toll of living with HS remains a part of my daily life,” she says.

Living with HS presents profound challenges, both physically and emotionally, for Sara. “The intense pain associated with the condition hinders my ability to enjoy hobbies and engage in routine activities, making work and movement particularly painful during flares. This has a substantial impact on my personal life, affecting my capacity for a typical married life and leading to frustration and a sense of unfairness. The emotional toll is significant, often leading me to feel demotivated or depressed. Memories of my childhood, when I underwent 5 surgeries per year, also add to the complexity,” Sara says.

Alongside medical intervention, adopting a healthy lifestyle, including proper hygiene practices and weight management, may positively contribute to HS management. Connecting with HS support groups or seeking counselling can provide valuable insights and emotional support. Patience is key, as finding the most effective treatment may take time. Regular follow-ups with healthcare providers ensure ongoing evaluation of the treatment plan and necessary adjustments. “Remembering that HS management is a collaborative effort between the individual and their healthcare team can empower patients to navigate their journey more effectively. Early diagnosis and timely intervention are crucial in halting the progression of the disease and enhancing treatment outcomes,” Dr Abdel Dayem says.

For those newly diagnosed with HS, Sara advises that the first step is to seek specialised medical care from a dermatologist experienced in treating HS. “Educate yourself about the condition, its triggers, and available treatments to actively participate in your care. Patience is crucial as finding the right treatment may take time. Build a support system by connecting with others who have HS, prioritise self-care, and advocate for yourself in discussions with your healthcare team. Remember that HS is just one aspect of your life; don’t let it define you. Stay informed about new treatments, and with the right care and support, many individuals with HS find effective ways to manage the condition and lead fulfilling lives,” she says.