I Grew Up Always Knowing . . . by Samantha Mosher
I was diagnosed with Turner syndrome (TS) at two weeks old. The doctor noticed my hands and feet were puffy from edema and ordered a karyotype to be sure, but she was confident that I had TS. My mom told me I had Turner syndrome when I was very young. I don't remember her telling me - it was just like I was born knowing I had it. She believed it was better if I knew right away. I think it helped with being able to process having TS and accepting it. I'm 4ft 11in tall. I never took growth hormones and didn't start hormone replacement therapy until I was 18. Living in a small town and without a vehicle, it made it difficult to be able to see specialists.
I have the following health issues: Hashimoto's hypothyroidism, thyroiditis, metabolic syndrome, essential hypertension, insulin resistance, bicuspid aortic valve, horseshoe kidney, nonrheumatic aortic valve insufficiency, and sensorineural hearing loss bilateral. I take several medications each day to treat my various TS-related health issues.
I was never really treated any differently because of having TS. Growing up, I was raised just like any other kid. I think not being an only child helped too. I never felt as though I was different than anyone else. I struggled with math in school and spatial recognition. That's common amongst girls and women with TS. Math still isn't my favorite thing. Most girls and women with TS are pretty smart, though. Turner Syndrome comes with a variety of challenges that are unique to everyone. I have always done my best to just take one day at a time. At around 9 months old, my mom noticed I wasn't trying to sit up, roll over, or crawl like my older sisters had. Come to find out, I had weak muscles. So, from 9 months up until I went to preschool, I worked with a team - physical therapist, an occupational therapist, and a special education teacher. I had to do all kinds of exercises to work on strengthening my muscles and to work on my fine and gross motor skills. I don't think I totally understood at the time, I just liked having people to play with and a lot of the exercises were fun, so I just thought we were playing games.
After a lot of hard work at about 1 or 1 1/2, I took my first steps. My therapists would have liked it if I crawled first but, like everything else, I did things my own way. My mom, my older sisters, and I were getting ready for bed. I was in the middle of the floor and my mom was helping one of my sisters with their PJs and I just stood up and walked across the room to my mom like it was no biggy, but it was a biggy. It was the moment we were working so hard for!
From the age of 2 up until maybe about 5 or 6, I was very hyperactive. I would get into all kinds of things and create mischief and mayhem from the time I got up until I finally went to bed. My mom said I was like having a set of twins rolled into one child. I wasn't allowed to take naps because if I did, I would go to bed around 8 or 9 and be back up ready and rearing to go at like midnight. I wasn't allowed naptime in kindergarten, either. It was hard for me to sit through movies or TV shows unless it was Mickey Mouse. My mom took me to the doctors and tried all kinds of things. Eventually, the doctor tried telling her I had ADD or ADHD and wanted to put me on medication. My mom asked the doctor to test me and was told that because of how young I was at the time, the test results most likely wouldn't be accurate, so they weren't going to. My mom told them she wouldn’t put me on unnecessary medication without testing
My mom talked to my preschool teacher, and she said that if my mom had the patience and could put up with it not to put me on medication because her daughter also had ADD and it got better as she got older. My mom never put me on medication and as I got older, it got better. I don't know if I had ADD or ADHD because I never got tested, but it is common amongst girls with Turner syndrome.
As a child, I often suffered from chronic ear infections. They would get so bad at times that my ears would bleed. The doctor constantly had to switch out antibiotics so that my body wouldn't get used to them. It seemed like I would get them every few months and this went on for years. I would get them so often that I couldn't tell when they were coming on until they were full-blown. The doctor said I probably was so used to feeling the slight discomfort and that it must have felt normal to me. My mom never had tubes put in my ears because she was scared to because one of my cousins had a bad incident with them. Luckily, as I got older, I started to get them less frequently.
Chronic ear infections can often lead to hearing loss. Many girls and women with TS need hearing aids. It is something to look out for. Having TS for me means I can't have children. I was born without any ovaries. Not being able to have my own biological children does suck worse than the suckiest thing that you could ever think of times infinity. I grew up always knowing this fact ever since I could remember. It was never hidden from me. I guess I had a lot of time to come to terms with it. It's just a part of TS I had to accept. I have my nieces and nephews and that helps! There are options out there like adoption, IVF, and surrogacy. Adoption is really my only option, but sadly all the legal mumbo jumbo is so expensive I don't know if I would be able to afford it. I would love to be able to carry my own child, but with my heart and my kidney, it probably wouldn't be advisable, so IVF is out of the question and again, too expensive.
Who knows? Maybe someday I will be able to adopt. I know this is one of the hardest things to deal with for lots of women with TS. It's not an easy thing. Everyone has to come to terms with this in their own way.
