Meet Sara, a 31-year-old woman living with HS

Sara first noticed symptoms of what would later be diagnosed as HS when she was 15 years old. During these years, she developed painful boils and abscesses in her armpits, groin, and other areas, which she hid from others out of fear and shame. 

Sara’s obesity and boils made her feel ashamed, and she did not want to be examined by a doctor. When she finally did, it took a lot of courage, and the doctor simply told her to wash herself with antibacterial soap. It did not help, and it took years before Sara again had the courage to show the boils to a doctor.

The disease has had a significant impact on her self-esteem and caused her to avoid relationships and activities like sports that might reveal her disease.

For Sara, the constant, severe pain and drainage from the abscesses is so unbearable at times. The pain keeps her from sleeping well, making her exhausted during the day. Living with pain and fatigue on a daily basis has made it very difficult for Sara to maintain a normal quality of life or a full-time job over the years.

Sara finds new boils appearing from time to time and treatments provide limited relief. She has tried many different types of treatment, and none of them seem to help her. Now she has found a doctor that knows the disease, understands her situation and says that they will keep trying to find a treatment to help her. This gives Sara hope.

More than anything, Sara wishes the HS would go away entirely so she could live a normal, active life unburdened by constant pain and embarrassment.

“I have accepted that my disease will not go away, and that I will never live a normal life. Pain and fear are part of my life. I feel isolated and with only limited options as the disease dictates my life. It is really a mean disease.“