My Discovery of Alopecia

I want to share with you how I learned about alopecia, but first a few facts I’ve learned on this journey:

Alopecia is an autoimmune disease that causes hair loss. There are varying degrees of hair loss from small patches (Alopecia Areata) to total hair loss all over the body (Alopecia Universalis). People of all ages, sexes, and ethnic backgrounds can be diagnosed with alopecia. Currently, there is no cure for Alopecia.

It was Monday, June 25th

We had just celebrated my oldest daughter’s 3rd birthday over the weekend. I was taking her braids down, getting her ready for hair wash day, when I felt the first patch of missing hair. My heart sank. My fingers froze. I got that sick feeling in my stomach. I tried not to panic as I called for my husband to come see. What was I looking at? What was happening to my baby’s beautiful hair?

I had spent the last year trying to find the perfect natural hair products for her beautiful curls, which debuted shortly after the age of 2. I had spent hours on YouTube and Pinterest learning to braid her hair and looking for cute, age-appropriate hairstyles. Most importantly, or so I thought, I was trying my hardest to teach her to love her beautiful hair because she constantly told me she wanted “hair that went down” like mine.

Being that it was around 6:30 p.m. on a Monday night, I did what any mother would do… I posted to Facebook asking for help in a local mom group. I was thinking it was ringworm or another type of fungus and I wasn’t sure if she should see our pediatrician or a dermatologist. We finally decided on a dermatologist. I called the next morning and luckily (or maybe unluckily) was able to get in that same week with someone highly recommended from the group.

I tried not to google and just wait till the appointment on Thursday, but by Wednesday all of a sudden it hit me. I had that sinking feeling in my stomach and I finally had to google it.

Alopecia.

I knew the word from cosmetology school, but all I knew about it was “bald patches.” I had a lot of anxiety that night… was this something I had caused with hair products or her braids? I barely slept, but I pulled myself together the next morning and I took my daughter to see Dr. Ursula (names have been changed to protect the awful).

Dr. Ursula looked over my daughter’s hair and face (I didn’t realize she had a skin problem) and told me she had alopecia, which they do nothing about (at this age), and possibly vitiligo – “You know, it is commonly referred to as the Michael Jackson disease” she said.

Tears start welling up in my eyes. She notices the tears and asks “do you even know what alopecia is?” I explained I had heard about it in cosmetology school. To which she replied, “Well this isn’t a reaction I would have ever expected.” At this point, the tears spilled over. How could this woman with thick, long, blonde hair judge me and tell me how I am supposed to react to the news that my 3-year-old daughter has a disease that causes random (and sometimes total) hair loss? I collected myself and my sweet girl and got out of there as quickly as possible. I called my husband from the parking lot and cried to him as I recounted the horrible experience. We made a plan to get a second opinion. We knew Dr. Ursula was probably right about the alopecia, but I was never going back to see her again.  

About two weeks later, my husband and I brought her to see another dermatologist. I was blown away by Dr. Glinda and her nurse – they were so kind and compassionate. She did confirm the alopecia but did not think it was caused by her braids due to the location. She disagreed with the vitiligo diagnosis altogether. Instead, Dr. Glinda thought that she had an uneven skin tone due to being out in the sun (it was summer after all), which was absolutely normal and encouraged us to keep extra sunscreen on her.

It has been a little over a year since those first spots appeared and I’m happy to report, they are all growing back nicely now. She has had new spots appear and does mentions her spots often because she can see the new growth (her largest spot was in the center above her forehead). I know we are blessed that alopecia isn’t life-threatening, but it is still hard to come to terms with and I sometimes cry when I find a new spot. So much emphasis is put on hair and beauty, especially for women of color, it makes my heart hurt to think she will be judged and/or made fun of for losing her hair – something that is completely out of her control. Even though I still want her to love her hair, I’m trying to focus on something more important… loving who she is on the inside.

Carrie is a Baton Rouge native. She is married to her favorite adventuring partner, Joseph, who she met in 2012. Together, they have two strong-willed and fun-loving daughters. She was a stay at home mom for 3 years before going to work part time as a preschool teacher’s assistant. Carrie has an associates in Environmental Science and is passionate about recycling and up-cycling. When she has the time, she enjoys reading mystery and thriller books, crafting, and playing games. She loves going on dates with her husband, especially when they are new adventures.

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