I was diagnosed with Turner Syndrome at two weeks old. The Doctor noticed when I was born that my hands and feet were puffy from Edema and ordered a Karyotype to be sure, but she was pretty confident that I had TS.
My mom told me I had Turner Syndrome when I was very young I don't actually remember her telling me it was just like I was born knowing that I had TS. She believed it was better if I knew right away. I definitely 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 a Bicuspid Aortic Valve, high blood pressure, high cholesterol, an underactive thyroid, horseshoe kidney, scoliosis, and blood sugar issues (no official diagnosis of diabetes yet). I take Larin Fe, Lisinopril, Levothyroxine, Hydrochlorothiazide, Rosuvastin Calcium, and Metformin. These are all to deal with the various health issues that I have because of TS.
I was never really treated any differently because of having TS. Growing up I was raised more or less 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 did struggle with math in school and spatial recognition. That's pretty 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 each individual. I have always done my best to just take one day at a time.
At around 9 months old my mom noticed that 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. A 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 really 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 we were in their bedroom and 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 be creating 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 tried all kinds of things she tried putting me on a special diet. Eventually, the Doctor tried telling her I had ADD or ADHD and wanted to put me on meds most likely Ritalin. 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 that if they weren't going to test me she wasn't going to put me on medication if it wasn't necessary. My mom talked to my preschool teacher about it and was told that if she had the patience and could put up with it not to put me on medication because my preschool teacher's daughter had ADD and it got better as she got older. My mom never put me on medication eventually as I started getting older it did get 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 which is common with girls with Turner Syndrome. 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 feel the slight discomfort 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. It's very rare now when I do get an ear infection. Chronic ear infections can often lead to hearing loss which is common with TS many girls and women with TS need hearing aids. So far I've been lucky I don't think I have hearing loss but is something to look out for.
Having Turner Syndrome means that I can't have children. I was born without any ovaries. Not being able to have my own biological children does suck like worse than the suckiest thing that you could ever think of timed by infinity. I grew up though 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 Turner Syndrome that I had to accept. Luckily though I have my nieces and nephews that helps too.
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 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 for a lot of women with Turner Syndrome this is one of the hardest parts to deal with it's not an easy thing. Each individual has to come to terms with this in their own way.
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