In December of 2012 my hair stylist noticed a small bald spot on the back of my head. Within a year, I had lost all the hair on my head and after another six months, I lost all the hair on my body.
I have Alopecia Areata Universalis, an auto-immune disorder that has no cure. Doctors don’t know what causes it, and my hair could grow back at any time. It's a terribly frustrating condition, so I've started to write about my stories and struggles with Alopecia in hopes that it might help anyone else going through this.
To get the rough overview on my situation, check out my timeline. Or read below for the latest updates.
As prescribed by Dr. Dunlap, this mix focuses on my auto-immune issues, iron deficiency, hair loss, insomnia, and fatigue.
I took some time off.
Finding medical reasons for your alopecia is time consuming and expensive. I spent a good two years in various doctors' offices with no real answers in return. I was tired and fed up with the medical community. I got to the point where I only believed that a better diet and overall health regime might strengthen my immune system enough to grow my hair back.
In Episode 2 of her new podcast, Women Of The Hour, Lena Dunham interviews one of my favorite alopecians. While discussing the relationships we have with our bodies, Rachel Fleit talks about growing up with alopecia.
*Please don't be allergic to eggs, please don't be allergic to eggs, please don't be allergic to eggs.*
I silently repeated this mantra as my nurse practitioner (Pam Rathbone) sat down and opened up my test results. Sure enough, it's the food I'm second most allergic to. Followed by sugar cane.
I finally made it to an endocrinologist!
After I saw Dr. Maria Hordinsky in June, she has been urging me to see an endocrinologist to discuss my low DHEAS and Testosterone levels. I tried for over a month to get into the OHSU endocrinology clinic, but my paperwork kept getting lost, no one would call me and tell me that, and (after having a generally had a bad attitude about the loops of the medical system) I basically told them I was too good for their services.
I always love going to see Dr. Roberts. She was the first doctor to really get into my hair loss pattern. When I first started seeing her, I still had a decent amount of hair and she was literally the first doctor to actually pull on my hair. After that, I knew she meant business.
Over a year ago, I started losing my hair. By January of 2014 I was completely bald and had lost all the hair on my entire body.
After many unsuccessful doctors visits and painful steroid injections, I decided to take matters into my own hands. I read everything I could on other's journeys with Alopecia Areata and found inspiration in their stories.
I didn't really worry about my alopecia until I started losing my eyebrows. A bald head? I could deal with that, it's sort of punk rock. But eyebrows and eyelashes? Those are what define your facial features and without them, I started looking like an alien.
Last December, a small bald patch appeared on the back of my head. Doctors diagnosed me with Alopecia Areata + told me I had a good chance that the hair would grow back.