HS is recognized to be significant in interfering with social interaction, job performance and attendance, and intimate relationships. Hidradenitis causes pain, itching, drainage, odor, and scarring, and may lead to marked embarrassment. There is, therefore, frequently significant emotional impact on patients and their families.
A number of measurement scales have been used to attempt to define the degree of emotional impact, and to compare results in HS/AI with that for other dermatologic diseases such as psoriasis or eczema. The Dermatologic Life Quality Index (DLQI) is one of the most widely used scoring systems, and evaluates the impact on daily life and relationships. By this measuring system, HS may be more severe than any other dermatologic condition.
Other systems to evaluate the emotional impact of HS, such as the Physician Global Assessment, or Patient Global Assessment questionnaires, the Visual Analog Scale (VAS) for pain, as well as specific evaluators of depression, plus the impact on close physical relationships all confirm the emotional, as well as physical, stresses of the disease.
The impact of HS on women may be especially devastating as per the following:
“How Hidradenitis Suppurativa Affects Women, Their Personal Lives, and Relationships” Per Drs. Lynne Margesson and Bill Danby:
Hidradenitis suppurativa is one of the most unpleasant of all skin diseases. It causes pain, debility, embarrassment and self-consciousness. Its negative impact on patient quality of life is more than many other skin diseases including psoriasis and atopic dermatitis. This distressing condition is worse for those that are severely affected, have an early onset and those with long disease duration and continuing development of new painful lesions.
Our skin is the most visible part of our body. It is important for our interpersonal relationships, self esteem and self image. Hidradenitis suppurativa causes painful malodorous sinuses, swollen abscesses and disfiguring scarring with unpredictable drainage that results in debilitating depression and embarrassment. For women starting with painful draining nodules at puberty or in their early teens, it ruins their confidence, resulting not only in depression but self destructive behavior. This is often made worse by inadequate or poor care. Too often there is no available care.
Women themselves tell the best stories. I asked two of my patients to describe their personal journey with hidradenitis suppurativa.
The first patient is now 40 years old and the mother of two young children. She has had hidradenitis suppurativa for 27 years. It started when she was 13 years of age and until she was 27 she did not know what her problem was. She had recurring painful lesions in her groin, under the breasts and under her arms. She was afraid of the pain initially and she thought it was because she was dirty or had poor hygiene habits. She was so embarrassed she hid her condition behind loose, bulky clothing. She would pinch the lesions to drain them. During her teens she stopped doing gymnastics because she eventually could not hide the lesions. She avoided dating and she kept trying to “keep her secret”. Her worst area was on her buttocks and when she met her husband she avoided having him see her naked. Finally she sought medical help and was told these “boils” were not due to poor personal habits.
With pregnancies her condition waxed and waned but at least “her secret was out” and she could discuss it. She did get support from her husband. Her main problem in the last six years has been the pain from recurrent lesions. Some of these develop suddenly from “golf balls to baseballs”. She has foul smelling drainage and wide open sores and finds herself, at time, covered with “millions of Band-Aids” so she will not leak through her clothes and on to furniture. Despite this she still will “bleed on her pants when out in public”. She has had two major surgical procedures and despite that the lesions continued appearing. This has resulted in depression. She continued trying numerous medications but unfortunately tolerated few of them. She has days and weeks when she is unable to move and even care for her children or her house. The condition is “physically, mentally, emotionally and financially draining”. Because of her problems she is now on disability from Social Security because she cannot hold a job.
The second patient is now in her early thirties. Her problem with hidradenitis started at age 20. She developed draining cysts on her chest and under her breasts and had no idea what was happening. She saw many doctors and was in the Emergency many times for draining of painful, sore lesions. She had many courses of antibiotics and plastic surgery and only after ten years did she learn the name of her problem. The surgeries at times were extremely painful and recovery took a toll. Without surgery the lesions would drain and at one point she had more than a dozen draining cysts on her chest. She had difficulty finding effective dressings to contain the constant drainage. Her shirts were saturated and the smell was horrid. Because of the drainage and odor she was unable to get a consistent job. She would have to take summers off because the heat and humidity flared the cysts and draining lesions. She had to limit her employment, could not take jobs that she wanted, and personal relationships were very difficult to maintain. She finally met a very supportive man who is now her husband but HS is still taking a toll on her marriage. Their intimate life has suffered greatly at times as she has had so many procedures. Her husband has had to help support her through the physical and emotional pain. To complicate matters, she has turned to overeating over the years to compensate for these issues, so weight is a constant issue. Severe depression has been the outcome. She continues to “self medicate with food”. It comforts her but she knows it ultimately causes more problems. She used to be a very active person and she would like to get back to exercise but she is afraid of too much activity as the friction can cause “new cysts”. The hidradenitis now controls her life, dictating her wardrobe, her activities, everything.
Hidradenitis needs to be diagnosed earlier. More effective management and support is needed. The HSF is working to promote this education, stimulate research and provide networks to help.
This information was originally published by the Hidradenitis Suppurativa Foundation
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