Living With HS: Tameka Carter's Journey to Diagnosis and Treatment

In this episode of MD Newsline, patient advocate Tameka Carter shares her personal journey living with hidradenitis suppurativa (HS), a chronic, painful inflammatory skin condition often misdiagnosed for years. Tameka discusses the early signs of HS, the emotional and physical toll of delayed diagnosis, and the importance of finding a specialist who truly listens. She offers valuable insight into treatment decision-making, lifestyle changes, and the critical role of self-advocacy in managing a lifelong condition. Episode Highlights Early Symptoms and Delayed Diagnosis Tameka reflects on experiencing painful boils as early as adolescence, often dismissed as razor bumps, cysts, or irritation. Despite recurring symptoms, she did not receive an HS diagnosis until 2019—highlighting a common challenge many HS patients face. Impact of Hormones and Life Changes Symptoms became more frequent and severe in her early 20s, particularly after pregnancy. Over time, Tameka began noticing patterns related to her menstrual cycle, helping her better understand flare triggers. The Emotional and Physical Burden of HS Living with chronic pain, drainage, and scarring significantly affected Tameka's quality of life and confidence. She shares how unmanaged HS can quietly take over daily living when symptoms become constant. Finding the Right Specialist Tameka emphasizes the turning point in her care after seeking a dermatologist who specializes in HS. Under the care of Dr. Onajin, she experienced a more aggressive, responsive treatment approach that prioritized real pain reduction and patient feedback. Personalized Treatment and Pain Measurement Rather than a one-size-fits-all approach, treatment success was measured by meaningful pain reduction percentages. This patient-centered strategy allowed Tameka and her care team to adjust therapies quickly when something wasn't working. Procedures, Medications, and Combination Care Tameka discusses the role of biologics, steroid injections, surgical procedures, and scar tissue removal as part of a comprehensive treatment plan—emphasizing that improvement was gradual, not overnight. Nutrition and Lifestyle as Key Triggers Diet emerged as one of the most impactful factors in managing HS. Tameka shares how eliminating refined sugar, dairy, and soda helped reduce flares, improve energy levels, and support overall well-being. Advocacy, Education, and Listening to Your Body A strong advocate for patient education, Tameka encourages others to research their condition, speak up when treatments fail, and seek second or third opinions. She underscores that patients know their bodies best—and deserve to be heard. Advice for Patients and Providers Tameka offers powerful guidance for those living with HS and for healthcare providers: listen, communicate clearly, and treat patients as partners in care. Key Takeaway Tameka Carter's story highlights the importance of early recognition, specialist care, and patient advocacy in managing hidradenitis suppurativa. Meaningful progress happens when patients are heard, treatments are personalized, and care teams act with urgency and compassion. Resources Website: https://mdnewsline.com/ Newsletter: https://mdnewsline.com/subscribe/