I am a 37-year-old wife and mother of three handsome boys and I have a disease called Congenital Adrenal Hyperplasia (CAH) with salt wasting. I have always wanted to share my story because I want the children with CAH and their parents to learn about the ups and downs of this condition through the eyes of somebody who has lived it.
I was born with CAH and diagnosed at birth, even though the doctors did not catch it, my mother who had two previous daughters with it, did. My genitalia was a bit abnormal but not ambiguous since I was declared a female at birth. I can’t honestly say I was aware that I had this condition, the only thing that reminded me of it was the daily medicine, which was monitored extremely well throughout my childhood and of course those dreaded 6-month doctor appointments, dreaded because I could not stand my pediatric endocrinologist.
I did notice that I was a bit of a tomboy growing up, I tried my best to act as feminine as I could but failed often. I went through puberty like a normal female.
It’s a confusing disease for families. I wanted to, from my perspective, lets parents know that they should tell their daughters that they’re pretty, show them love, dress them up, understand low self-esteem and encourage confidence–and most importantly, they should find an understanding doctor to lead them through this journey.
I would also advise that parents not advertise it throughout childhood. The world does not have to know about this…CAH is complicated, others will not understand it. My mother never told anybody (teachers, dentists, friends, family etc). I am completely grateful she kept it quiet, it prevented me from getting stereotyped. Today, I do not tell family doctors I have this condition, but instead I say “I have an adrenal insufficiency, I take prednisone” & that is the farthest I go. They don’t need to know about my surgeries. It is none of their business!
If pregnant with a boy think twice before taking Dexamethasone, I took it with my first 2 and had gestational diabetes. With my 3rd I decided to take Prednisone after 3 months of pregnancy and did not have gestational diabetes. Not sure if there is a connection but a study should be done.
I did have corrective surgery at age 12 then again at 18 years old. I was sexually active with my boyfriend (my future husband) soon after the last surgery. I just wanted to feel normal and that all my parts worked. For some twisted reason I thought pregnancy was not possible. I asked my doctor and he said I had a 60% chance of getting pregnant. Before marrying my handsome husband, I shared my condition with him and my 60% chance of pregnancy. He accepted me and was not bothered by it. We got married I had my husband get a genetic test for CAH, he was not a carrier.
We became pregnant 10 months after our wedding. I gave birth to a healthy baby boy vaginally. My second son came 15 months after. My 3rd son came 4 years later but within weeks of removing my IUD. Pregnancy was not difficult in any way, I think I was more fertile than a normal female. Today I lead a very healthy sexual life with my husband, even though it took me years after my first sexual experience to have an orgasm, today I experience them regularly.
I can write pages and pages of my life but I don’t want to bore you in any way. All in all, it wasn’t until my mid-teens that I accepted my condition, it is all thanks to my second pediatric endocrine doctor, he made me feel beautiful, special, and was just extremely caring. Because of him I lead the life I do, I am happy, successful, & understanding. I hope to one day reconnect with him, and tell him how much he means to me.
If you have any questions please don’t hesitate to ask me, I am here to help and make your daughters journeys an easier one.