There is Hope - by Krystle Smith
My name is Krystle. I’m 37 years old. I was diagnosed with rheumatoid arthritis (RA) at 9 months old. At 12, I was diagnosed with Turner syndrome (TS). My TS went undiagnosed for longer than most because most of my “symptoms” (shortness of stature, 4th metacarpal sign) were all attributed to the rheumatoid arthritis. I saw a new pediatrician and she seemed to think that this was far more than RA. She suggested diagnostic testing and shortly after, I received the official diagnosis.
I will never forget getting called out of class and seeing my mother sob in the hallway. She explained my diagnosis and was determined to get the absolute best medical care for me. After a few appointments, we decided to start growth hormone injections. I had a goal to hit 5’0 tall, and then I would stop the injections.
I remember being depressed because I wasn’t developing like the other girls in my class. So, we started birth control pills in an attempt to start puberty. It worked! I started to feel more like my peers! I remember doing my injections on our school trip to Washington, DC, and my classmates thought it was awesome that I could do it on my own, although they had no idea what my diagnosis was.
I finally hit my height goal and decided it was time to stop the injections. I remember my endocrinologist cheering for me when he took my height that day. I was never really open about my diagnosis, because I was sort of “ashamed.” Only my closest friends & family knew. Today, I am open to talk about it to raise awareness.
I’m a mortgage loan closer for a great company. I have a fiancé who has done a ton of research on TS.
About a month ago, I found out that I am in menopause. That has caused some pretty severe osteoporosis. I’m not sure if I could make it through without my amazing support group. I have connected with some of the most incredible people because of the Turner Syndrome Society of the United States (TSSUS).
If you, your child, or a loved one has recently been diagnosed, please know that there is hope! And parents, trust your gut. If you feel like your daughter may have TS, push for the tests! Who knows where I’d be if it weren’t for my mom and that AMAZING pediatrician.