Embracing My Truth: Living with Hidradenitis Suppurativa
My journey into womanhood was marked by a painful and debilitating chronic skin condition called hidradenitis suppurativa (HS). I was just 11 years old when a golf ball-sized boil appeared under my right armpit, leaving me feeling confused and scared. After a series of misdiagnoses, I finally received the correct diagnosis, which changed my life forever.
The Struggle for Diagnosis
Getting an accurate diagnosis was a daunting task. Doctors often misdiagnosed me with infections like MRSA, and one even told me I had a rare blood disorder and was likely to die. It took two years and a clinical trial at the Henry Ford Hospital for me to finally receive the correct diagnosis from Dr. Iltefat Hamzavi.
Finding Treatment and Empowerment
With the correct diagnosis, I began a treatment plan that would help me regain control over my life. Dr. Hamzavi started me on a cycle of antibiotics, which marked the beginning of my journey towards healing. Through a series of clinical trials, I explored various treatment options, including laser therapy and surgery. While not all were successful, I finally found a treatment plan that worked for me.
Managing HS and Pursuing My Dreams
Living with HS has presented numerous physical and emotional challenges, but I refused to let it hold me back. I pursued a career in journalism and filmmaking, earning scholarships and graduating with honors. Through therapy and self-care, I learned to cope with the pain and emotional toll of HS.
Turning Pain into Purpose
I decided to produce and direct a documentary about HS, “My Gold Lining: A Documentary on Hidradenitis Suppurativa,” which explores the lives of two African American women living with the condition. The film premiered to a sold-out audience and has sparked a movement to raise awareness about HS. I’ve also produced and hosted a virtual HS awareness summit and plan to launch more advocacy campaigns in the future.
The Power of Resilience
Living with HS has taught me that happiness takes time, effort, and patience. It’s essential to surround yourself with a supportive team and focus on your will to survive. By taking small steps towards your goals each day, you can overcome even the most daunting challenges. Remember, your health restrictions do not define your potential.
A Message of Hope
HS may have changed my life, but it hasn’t defined it. I’ve learned to thrive despite the challenges, and I hope my story inspires others to do the same. Whether you’re living with HS or another chronic condition, remember that you have the power to turn your pain into purpose. Take control of your story, and never give up on your dreams.
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