Don't Let Anyone Tell You That You Can't Do Something - by Karen Johnson

My name is Karen, and I am 55 years old. I have mosaic Turner syndrome along with Bell’s Palsy. While I was born in Madison, Wisconsin; I currently live in Winterset, Iowa. I have 2 older brothers and an older sister. Growing up, I was always way shorter than my siblings. At one point, my bother Kevin was 2 feet taller than me! At present, he is a foot and a half taller than me, and my sister Kristie is 13 inches taller. So, I know what it is like to be the short one.

In elementary school I had a few learning difficulties. I had to take speech therapy (so did my brother Kris and my sister Kristie). I was behind in reading and couldn’t spell at all. I could copy printed words, but any attempts at writing my own thoughts was way more like chicken scratches. No wonder I had to repeat the 3rd grade! Along with the fact, I was only 3’11” tall, the teachers wanted to give me more time to grow emotionally and socially. That’s what my dad told me. Oddly enough, I was good at math. The Spring of ‘75 was the best time to learn multiplication tables, Multiplication Rock was shown on TV every Saturday morning. Plus, my brother Kris drilled me endlessly. I still can remember, proudly telling Kris, “l know what 12 times 12 is”. “What is it?” “144”. “OK, what is 13 times 13?” “Umm”

Unfortunately, the very next morning, a fellow 3rd grader walked up to the teacher and proudly said,” I’m ready for Karen. I know my 12 timetables.” I responded, “What is 12 times 12?” He responded “144”. And you guessed it, I couldn’t resist saying, “OK, what is 13 times 13?” He had the same shocked look I had when my brother asked me that. I then blurted out “169”. Needless to say, the teacher had a long talk with my parents. It all ended well. The boy came back the next day knowing his 13 times tables. And the teacher, who was in her early 60s, told the principal, “I never had a group of students learn their timetables any faster.”

As time went on, I still was very short and hadn’t reached puberty. I ended up spending my 16th birthday in the hospital having tests done. It took a while for the results, and I think they did a couple of karyotypes to be double sure. It was the summer between 9th and 10th grade, July 1982, when I found out that I have mosaic Turner Syndrome. I was 16 years old. My parents decided they wanted to put me on medication to get me to grow taller before trying any estrogen.

High school was hard enough trying to fit in, let alone feeling so “different “. I don’t think the other students ever took me very seriously. It wasn’t until I was 18 that they put me on a very low dose of estrogen in a liquid form. The pharmacist had to use compound medicine to get it in that state. It tasted terrible. I started going to Iowa State University when I was 19. I lived in the dorms. I can remember sharing a suite with 3 other women. We shared the same bathroom. We had a set of shelves, where we placed all our toiletries. My lack of puberty was quickly revealed when I didn’t have any feminine napkins or tampons of my own sitting on the shelves. This was a major concern. I thought I would at least show some spotting. The doctor’s response was to do a pelvic exam and place me on birth control.

In September 1986, it was a very strange feeling when my dad came to visit me at Iowa State University and handed me my first package of birth control pills. I was a nervous wreck. I keep thinking, “What if this doesn’t work?” But it came out okay. In 0ctober 1986, at the age of 20, I had my first period. I even talked a couple of guy friends into taking me out to Great Plains Pizza to celebrate. Delayed puberty is not something I would wish on anyone else. It has major effect on self-esteem. In my case, it even caused depression.

This is one of the reasons why, I think with TS, we need more awareness. The earlier a person is diagnosed, the more intervention can be done to help lead to a more normal life.

Though it wasn’t easy, I did manage to graduate from Iowa State University. Today I am 4’8”, single, and I work at a lawn care company doing accounts receivables. I am active in several community organizations. I sing in the church choir and play base drum in the community band, although I am not sure how much longer I will be able to do that. My hearing is not the best, and I wear hearing aids.

As far as health problems, my thyroid is okay, and my heart is okay. I do have hypertension, but at this point, don’t need medicine to keep it in check. My parents both have high blood pressure and take medication. In 2020, I did have a couple of kidney stones removed. I wasn’t happy that the doctor insisted that I have an echocardiogram before the surgery. I wanted to cry “I don’t want to.” But I still had it done because I know how important it is. Better to be safe than sorry. Oddly enough, as poor as my hearing is, it was my brother Kevin who had the earaches while growing up. I have moles on my face, but so does my brother Kris. It isn’t always easy to know what is Turner syndrome related and what isn’t. I am pretty sure my Bell’s Palsy isn’t TS related.

For the most part, my life has been good. I love cats, I love to read, and I love to write poems and lyrics. I guess if I were to give advice, it would be - Don’t ever let anyone tell you that you can’t do something. Be the one to prove them wrong.