The Beginning!

When I meet new people I don't typically start off with "Hi, I'm Suzanne. I have alopecia." If I'm out of my house I am typically wearing a wig or a hat. I'm comfortable with my hair loss and will "go bald" when I'm in familiar company or just hanging around the house. At some point though, especially in female company, the topic of hair comes up, and I have to tell my story. So, here goes...

I was diagnosed with Alopecia in April 2007, just 2 weeks before my 23rd birthday and 6 months before my wedding. I was at work, in a meeting, and I just happened to run my fingers through my hair. Typically, my hair would be in a ponytail, but for whatever reason, it was down that day. I noticed a patch that felt different. It was smooth, soft, and about the size of a quarter. I turned to my boss, moved the hair from around the patch and asked "Do I have a bald spot?!" Of course she said yes, and for the rest of the day I kept feeling that spot, silently freaking out.

I got home a few hours later...how I lasted that long I have no idea. I immediately started searching my scalp for any other spots and I was heartbroken to find several more dime and nickel sized patches. I searched, tears streaming down my face, wondering how I hadn't noticed them before.

In the days to follow, I went to the doctor, had blood work done, and then got the news I had already figured out from Dr. Google. I had Alopecia Areata. I had a lot of questions.

Is there treatment?
Will my hair ever come back?
Will I pass this on to my kids?
I'm getting married in October, will I still have hair?

For anyone that doesn't know:

Alopecia areata is a common autoimmune skin disease, causing hair loss on the scalp, face and sometimes on other areas of the body. In fact, it affects as many as 6.8 million people in the U.S. with a lifetime risk of 2.1%. 

People of all ages, both sexes and all ethnic groups can develop alopecia areata. It often first appears during childhood and can be different for everyone who has it. (National Alopecia Areata Foundation www.naaf.org)

In May, I began receiving intralesional corticosteroid injections. In other words, I had a teeny tiny needle injection medication directly into my scalp. I honestly don't know if it helped. I think at most it slowed my hair loss, but that was still happening. I went every 4-6 weeks until December. I remember once counting every injection...I stopped after I got to 160. It was disheartening to say the least.

 

In case you were curious, I did make it my October 6th wedding with a more or less full head of hair. There was some clever arranging to cover certain spots, but it was mine and I was thrilled!

Just 6 weeks later I was a bridesmaid in a friend's wedding and I still had most of my hair, but it was an even greater challenge for the hair dresser to cover what she could. I had a bit of a break down at the salon. It was only the beginning. Having always had a very thick and full head of hair anything less was shocking.

I was still under going treatment, but it was not working. At my December appointment I was told I could continue treatment, though it was not effective or I could try a more aggressive treatment, taking ciclosporin, an immunosuppressant. The possible side effects, which include cancer, and the fact that I absolutely, should NOT, get pregnant while on it made the choice an easy no. I might say that I would give anything to have my hair, but ultimately risking cancer was not worth it.

 On January 16, 2008, I broke up with my dermatologist. Not only weren't the treatments working, but I was PREGNANT!!! During my pregnancy, all of my patches filled in. My hair watch thick and full. I knew I wasn't cured, but I was hopeful that my pregnancy induced remission would continue post partum.

Almost immediately after the birth of my daughter on October 1st, my hair became brittle and started falling out...again! I had my last salon hair cut in December 2008. By February 2009 I made the difficult but freeing decision to shave my head. Any efforts I made to cover the (in hindsight) large spots were not effective. I wrapped my bald head in a scarf until I bought my first wig in May 2009.



 

Over the next year I lost my eyebrows and eyelashes. You really don't realize how weird a person can look without eyebrows until you don't have any. I HATED IT!!! I became pregnant with my second child, a boy. Unlike my first pregnancy, nothing grew back. My son was born in May 2010. I love him, but hated having my picture taken.

During my pregnancy with my second son my eyelashes grew back. It wasn't until after his birth in November 2011 my eyebrows showed up.

My eyelashes and eyebrows have stayed with me ever since, but my hair seems gone for good.

Seriously, in the grand scheme of things if I am going to "suffer" from a disease let it be one that may bruise my ego, but leaves my health (mostly) in tact.

I have been happily married for almost 10 years. I have 3 happy, healthy, thriving children. I really couldn't ask for a better life. Well, I wouldn't mind winning the lottery, but that is a topic for another day.

💜 Suzanne