My Tuner Syndrome Journey Part One

February is Tuner Syndrome awareness month (because it's the shortest of the year!... Badum~tish), so even though I've neglected my blog for well over a year, I wanted to share my Tuners story. It's a post that has been on my mind for awhile now, but I guess I've just never gotten the courage to write it.  I've finally decided to do it because I've heard several stories now about the lack of awareness among doctors, and I've made it part of my New Years Resolution to raise awareness.

Besides raising awareness, the main reason why I'm finally opening myself up to share my experience is because I've thought a lot recently about becoming part of a Tuners support group - not for myself, but to help young girls that have just been diagnosed, and their parents. I want to share my experience with those girls because I know how hard it is to always be the shortest kid in class - and teased for it. I want to share my experience with their parents, to prepare them for the heartbreak they might feel when their little girl runs to them in second grade and tells them excitedly that they're finally taller than the kindergartners. But I want to share my journey with others, not just to prepare them for these things, but to show them that it isn't always difficult. That the short jokes lose their sting, as long as you learn to embrace your short stature. That your daughter may always be small, but it never has to stop her from conquering the world.

I was diagnosed at seven years old, and some of my earliest, distinctive memories center around my diagnosis. I remember my mom buying me the babysitter Barbie doll (the one with three babies that you could stick to Barbie with velcro) because I had to have blood work done for the karotyping test and I was scared of needles.

I remember the day we received the diagnoses.  I remember the conference room we sat in, and I remember that it was the day the Children's Hospital was taking photos for a magazine, and they took mine to be in it.

I remember getting an ultrasound of my heart sometime shortly after The Lion King came out, because I got to watch it during the scan - I guess they thought a seven year old might get freaked out seeing an image of their own heart on a screen.

And I can remember sitting on my brother's lap while the doctor discussed with my parent's starting me on growth hormones so I could catch up to my peers to some degree.  They talked with me about it a little later, and asked me if it was something that I would want to do.  I was maybe eight or nine at the time, so I didn't understand much about it beyond the fact that it would mean a shot every night to help me grow taller.  I must have seemed hesitant, because my mom made the deal with me that if I could be brave enough to start the treatment, she would take me to a Hanson concert.  Well, that was all the convincing that I needed, because the summer before I started fourth grade, we began the growth hormone injections.

And they must have woken up some latent genes because that was when my hair went from stick straight blonde to curly red. We continued them until eight grade, when my height had reached it's plateau and the doctors felt that they wouldn't do much more. Usually around this time, girls would also start estrogen replacement therapy to promote the growth of breasts and hips, but because I have mosaic turners, I luckily didn't need it.

[That's it for part one - I'll post part two at some point later this month!]