Jacqui S. – CCCA
Then she lived! My journey with CCCA
Then, she lived!
Hey everyone, I’m Jacqui and I’m 36. My journey with CCCA likely started when I was 16 or 17, but symptoms (itching/burning) started much younger. Unfortunately, not enough was known about CCCA back then, so I was initially misdiagnosed a few times by dermatologists that weren’t treating my hair texture and pigment.
In high school, my hair began to thin in spots in the middle, so my hairdresser stopped perming my hair and we used braids and a hot comb instead. When I arrived at college, 10 hours away from home, the braiding experience became unmanageable and the thinning got worse, so I eventually went to visit a barber and had them cut off most of my hair. I tried to grow it out again, but once a hot comb was put to my hair, rollers seemed to disintegrate into thin air.
The next dermatologist prescribed Rogain and topical steroids that ultimately made me very sick and didn’t help. Around my 22nd birthday, we finally found a NY based hair specialist with a NJ office. After nearly 6 years, this was the first time that any dermatologist STARTED my assessment with a scalp biopsy. I’ll never forget the care given to me by the physician’s assistant – Jenn. I passed out during the biopsy – an experience that others have likely had. I cried in her office, because no one had ever been able to pinpoint “what was wrong with me.”
She explained that I had “scarring alopecia” and I had no clue what that meant. It’s not from too much perming, or too much traction – but a “rare – autoimmune disorder.” My mom was there with me to support me while I cried some more, and my fiancé was extremely supportive. Although he didn’t know how to help me (his support and lack of judgement were sufficient), I knew that it didn’t matter to him. Despite this diagnosis, I still didn’t know that there were different types, or how to best prevent my flare-ups.
Two years later, I moved to New England and met dermatologist #6, providing them with my biopsy results from dermatologist #5. They gave me more shampoos and another steroid –neither of which helped control my fare-ups. The stress of moving to a new state, being a newlywed, a new job, a PhD program, and losing my hair made the flares worse than ever, so I started wearing wigs.
After a mishap a day before a trip, I met the most important person in my hair journey, my friend and beloved hair dresser, Rahsaan Gomes-McCreary. Over the course of four years, she answered all of my questions, phone calls, dealt with my tears, freak outs and celebrated milestones. Thanks to Rahsaan’s encouragement in May 2020, I went outside without my wig for the first time in 7 years – to Dr. Helena Kuhn’s office, a hair loss specialist at Brown Dermatology. I was terrified, because I hadn’t gone back to address my hair issue in nine years because the previous doctors didn’t even try to understand.
After two minutes with Dr. Kuhn, I burt into tears of relief, because she UNDERSTOOD and LISTENED! I immediately called my husband, and told him what happened. I was afraid, but he supported my decision to stop wearing my wigs and just be me!
Women bond over many things – but hair is one of the most important ones! Color, texture, products used, and the amount of time it takes to style one’s hair – we talk about it all! I’ve received well intentioned comments from loved ones such as, “well there are tons of wig options, and you can choose your hair to me as long and pretty as you want” or “how exciting, you get to change your hair whenever you want.” They fail to understand that “people like me” spend thousands each year just trying to get their hair to look the same and not have their hair show.
Food supplements or dietary changes won’t create new hair follicles. While the Covid-19 pandemic has created much loss and devastation, I gained time to trial and fall in love with my own scalp – shiny spots and all, and transition to a space of freedom – no more wigs, unless I choose to change things up! Love ya!