The Hidradenitis Suppurativa Warrior: Tia Ivy's Story

In 2017, Tia M. Ivy was diagnosed with Hidradenitis Suppurativa. Tia’s mission is to educate women, men, young adults, teenagers and community leaders on the signs and symptoms and to provide a variety of resources.

Thanks, Tia, for sharing your story!

Tia’s Story

My name is Tia M. Ivy.

Around 2010-2011, I begin to notice nodules in my armpits then later in other areas of my body. It was not until 2017, that my Primary Care Physician diagnosed me with Hidradenitis Suppurativa.

Hidradenitis Suppurativa is a chronic inflammatory disease that causes painful lumps and nodules to develop in the armpits, groin, breast, thigh and anal regions. It is believed that the disease is caused by an obstruction to the hair follicles and inflammation of the sweat glands. Women are three time more likely to develop the disease than men. There is on an average a 7-year delay in diagnosis.

Hidradenitis Suppurativa usually develops around puberty because this is when sweat glands are activated by hormones called sex hormones which increases during puberty. I believe I have had this disease my entire life. Around age 12 or 13, I began to have issues with deodorant. My underarm perspiration was stronger in smell than most young girls my age. There were many years of trying to find deodorants that would prevent or reduce perspiration to help with the odor.

Hidradenitis Suppurativa affects every aspect of your life.

The diagnosis reduces the quality of your life, many suffer tremendously. There are days when I do not want to get out of bed or go to bed around 6 p.m. and not wake up until the next morning. Going to the grocery store and shopping for groceries is difficult. Running simple errands is exhausting. It is mentally and emotionally exhausting. The exact cause of Hidradenitis Suppurativa is not known. However, HS is believed to be the result of a defect in the hair follicles. Some studies have found that 30 to 40 percent of affected individuals have at least one family member with the disorder.

While there is no cure for the disease, there are treatments which help manage pain, reduce and prevent the formation of lumps and nodules. In September 2015, the Food and Drug Administration approved Humira for the treatment of moderate to severe Hidradenitis Suppurativa. Other treatments are antibiotics which help to reduce inflammation and stop new breakouts; corticosteroids that are injected into the lumps; pain medications that help relieve discomfort and surgical excision that removes the area affected by HS. In October 2018, I underwent surgical excision to remove Hidradenitis Suppurativa from both my left and right thighs.

My advice to any that is suffering from HS is to be hopeful and maintain a positive outlook.

Learn everything you can about Hidradenitis Suppurativa, just maybe you might be able to help someone get an early diagnosis. Get emotional support for yourself, seek out other individuals who are also dealing with a chronic disease and find a new hobby

Tia holds a Associate’s degree in Art from Cuyahoga Community college. She also received a Career Enhancement Certificate in Gerontology from Stark State College. Currently, Tia is a Home Care Attendant and a Substitute Educational Aide for Akron Public Schools.