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Three words that changed my life

At the age of 28… I finally learned what lay behind my suffering: congenital adrenal hyperplasia (CAH).

Guest post by: Allison Landa, writer, performer and advocate for early awareness of 21-OH CAH 

I suspected that something was seriously wrong with me. By the age of 10, thick black strands of hair stretched across my chin and upper lip, forming sideburns rivaling the 1970s mutton-chop trend.

My skin became slack and soft.

When bald spots began cropping up, I figured I was just destined to be different. More than different, actually, but something less than a freak. I was just me.

By the time I met Adam, the man who would eventually become my husband, at the age of 28, I had a full beard and moustache despite shaving my face twice daily. He claims he never noticed, that his attention was drawn to my smile, my laugh, the yen for adventure that he shared.

Adam’s devotion gave me the strength to see an endocrinologist not long after we started dating. After a mercifully brief physical examination and a full blood panel, I finally learned what lay behind my suffering: congenital adrenal hyperplasia (CAH).

Specifically, I have the most common form of CAH: 21-hydroxylase-deficient congenital adrenal hyperplasia.

“At the age of 28… I finally learned what lay behind my suffering: congenital adrenal hyperplasia (CAH)”

What If?

During the three years it took my mother to get and successfully stay pregnant, she was monitored, poked and prodded as much as anyone could stand during her twice-weekly trips from suburban Connecticut to the specialist in Manhattan.

As her pregnancy progressed, she had little to no clue about the condition that would eventually lead to decades of unwanted attention, insecurity, and the well-meaning store cashiers who called me Sir.

What if today’s genetic screening had been around back then? What if she could have helped me to understand that there was a why behind what was happening to me, that it wasn’t just how things were meant to be, that there was something that I could do to take control of my body?

Taking Charge

Once I knew what I was dealing with, I was able to do something about CAH. For years I took a trifecta of daily medications to balance my hormones, and followed a strict regimen of doctor’s visits to ensure my body behaved itself.  Today I am on no medication and my body continues to behave itself.

But we are all abandoned to life’s fates, and there was another surprise waiting for me. After years of insisting we didn’t want a child –and figuring it wasn’t in the cards for me due to my condition — I unexpectedly became pregnant at 40.

We did everything we could to make sure we were armed with the knowledge my mother didn’t have access to when she was expecting me. We fretted: Would our baby inherit CAH?

Consulting with my doctors, speaking with a genetic counselor, getting tested, we did it all. We learned that our child was at low risk for CAH – and that we were expecting a baby boy.

Adam and I were ready to fight alongside our son no matter the battle, but we also wanted to know what lay ahead. Had Baz been affected, we would understand what needed to be done.

Crown Beach by Rebecca Brown George
Photo credit: Rebecca Brown Photo

A genetic screen offers insight that can be hard to know yet imperative to understand. It means being prepared to give your child the best start possible, the life he or she deserves.

And trust me, CAH is not a life sentence—particularly if you are prepared to handle it. I’m glad we were.

To learn more about congenital adrenal hyperplasia and the benefits of early awareness provided by expanded carrier screening, visit cah.counsyl.com.

About the author:

Allison Landa is a Berkeley, CA-based writer and performer with work featured in The Guardian, The Washington Post, the Huffington Post, and Salon Magazine. She has performed on stages in San Francisco, New York, and Austin. Visit her online at allisonlanda.com.

Disclaimer: This is a sponsored conversation written by me on behalf of Counsyl. All views and opinions in this article are my own.

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