Living with a skin disorder impacts more than just appearance — chronic conditions bring physical and emotional challenges to millions of Americans every day.
Brindley Brooks
Founder & CEO, HS Connect; President, Coalition of Skin Diseases
Skin is not just an organ; it is both literally and figuratively the body’s largest and most vital protector, covering an average of 21 square feet in adults. It shields us from external harm, regulates temperature, and serves as an essential barrier to the world. For the more than 84 million people in the United States living with a skin condition, it is also how the world judges us. For over one-third of the population, skin presents a daily challenge physically and psychosocially, affecting their quality of life in profound ways.
While the visibility of some conditions can exacerbate the challenges faced, it is crucial to recognize that invisible skin diseases, like hidradenitis suppurativa (HS), carry a significant toll. As someone who has lived with HS for 36 years, I understand firsthand the shame and isolation that come from dealing with a chronic skin condition. For 27 of those years, I kept my condition a secret, sharing it only with those who truly needed to know. The emotional weight of this secret has left permanent scars on both my body and my soul. Whether a condition is visible or not, the burden on individuals is immeasurable.
More than skin deep
Debilitating boil-like abscesses appearing on your body, constantly draining wounds, tunnels forming under your skin, excruciating abscesses that drain spontaneously after unbearable pain, destroying clothing, creating embarrassing situations, gauze, bandages, tape, hours of tending to wounds, just trying to maintain an outward appearance of normalcy are are all a part of what life with HS is like. While HS can impact anywhere a hair follicle exists on the body, it is most commonly found in our most private places: armpits, groin, inner thighs, and under breasts. While not visible from the outside, living with this deep secret carries its own weight and impact.
While hidradenitis suppurativa is only one of the many conditions we represent at the Coalition of Skin Diseases (CSD), we all share a common experience: the impact of our skin. The CSD is proud to stand as a united front, bringing together over 30 United States-based skin-related organizations, including patient advocacy groups, professional associations, and industry partners, to amplify the voices of those living with dermatologic diseases. We are committed to raising awareness, fostering understanding, and changing the narrative surrounding skin disease. Our goal is to transform perceptions, turning “imperfect” into “I’m perfect” — a message of empowerment and acceptance for all individuals affected by skin conditions.
The CSD is encouraged by the growing awareness and attention being given to skin health. Together, we can create a more inclusive and supportive society where everyone is valued regardless of the condition of their skin.
