There's Nothing Wrong with Asking for Help - by Erica Schueder
February is Turner Syndrome and Raynaud's Awareness Months. In honor, I would like to share my story for those who are interested in learning a little about it. I was born in small town Cherokee in northwest Iowa. At the time I was born, I was a normal 7 lbs. 8 oz 19" long. The only thing doctors noticed was that I had puffy hands and feet and a high roof of the mouth (palate).
By the time I was 2, I only weighed 18 pounds and wasn't growing. The family physician told my parents "I know something is wrong with her, I just don't know it is." We were sent to Sioux City for some testing. From there, we went to Omaha, Nebraska to meet with the endocrinologist. She took one look at me and told my parents that it was Turner syndrome. Of course, there would be a karyotype test (a genetic testing of chromosomes) to confirm it. So, in November of 1989 I was officially diagnosed with having a 45X chromosome instead of the normal 45XX in females.
After I was diagnosed, we learned there was another girl, Holly, from my small hometown who was diagnosed a year before me. Her family helped my parents out so much. I'm not sure where we'd be if it was not for them! One of the main characteristics of TS is short stature. I started growth hormone at age 3. I'm told that I was difficult to give the shots to. I would always scream for my grandma Betty or our close family friend to come hold me. Once I got older, I thought it was "cool" to show my friends how I could give myself a shot. I was on growth hormone until I was 15. I grew to 5’ 2 1/2”. Without the shots, I would have been approximately 4’ 7”.
Girls with Turner syndrome also don’t produce hormones. So, at 15, I started on hormone replacement therapy (HRT). I was also diagnosed with a heart condition called bicuspid valve at age 15 - also a result of TS. I had a terrible time in school. My parents fought so hard to get me the help I needed. Unfortunately, every time they tested me; I would do fine because it was one on one.
It wasn't until high school, when 2 teachers could see I was struggling, that I got the help I needed. One of the teachers, who was another family friend and the resource teacher, Mrs. Bechtel, went to the principle and got him to agree to let me get help in the resource room. I was able to get help with my homework and had my tests read to me. Another characteristic trait is learning difficulties. I learn better 1 on 1 and having things read to me. I went to college in Sioux City and struggled but graduated with my associates to be an administrative assistant and got a job as a teller at a bank.
At the age of 23, I got married. At age 25 I was diagnosed with thyroid cancer. Thyroid issues are also common in TS). I had my thyroid removed and did iodine radiation. Then unfortunately, my husband couldn’t handle my health issues and he became abusive. When I was 27, we divorced. After my divorce, I moved to Des Moines, Iowa and started a new life. I had a job at another bank, I owned my own home, and was very happy being independent!
While living In Des Moines, I was diagnosed with Raynaud's phenomenon, Celiac disease, and lymphedema (Celiac and lymphedema are both TS related). With the Raynaud's, I need to keep myself warm. If I'm cold, I turn purple and it's very painful. With the Celiac, I am continuing to learn the gluten free diet. Since my health has declined, I decided it was best to move home. I’ve developed kidney issues and now have stage 3 kidney disease.
My cardiologist is amazing and specializes in women with TS. I am very blessed to have such a supportive family and even though I don’t always like it, I’m grateful to my parents for letting me live in the basement for the time being. I’m also grateful to my sister Mary for recommending the best doctors. I have been helping mom with daycare.
I can't ever remember a time when I didn't know about Turner syndrome. I recently learned that my bicuspid is getting a little worse and I now have an aortic aneurysm. I’ll probably be needing heart surgery in the next 3-4 years. This is something we’re keeping a close eye on .
The years of growth hormone messed my hip joints up. I am going to need both hips replaced. I am trying to put it off as long as I can with physical therapy. In October I celebrated 10 years cancer free! When I first moved back home, I was so angry and would cry at the drop a hat. I’m now on medication for my anxiety and went to counseling for a while. There is nothing wrong with admitting that you need help! I continue to go in for my checkups and being BUTTERFLY STRONG!