Sweet Colleen

I came across the blog of Colleen Joyce, which can be found on this page under Turner's Syndrome links as well as Blogs We Follow. Colleen is only 15 years old, but is already creating awareness of Turner's Syndrome in a very honest and refreshing way. I am so excited to share her story, along with a question and answer session we had via email! God bless you Colleen for being such a positive role-model for our girls! We look forward to seeing you continue to do GREAT things!!


Colleen's Story:

My Life...I've known that I have TS since I was 3 years old. It was hard for my mom and dad when they found out. I was usually really sick which is where all the doctor visits came in. We would learn new information , like how tall I was, my general health, and how I was doing with the injections. But I got through all of those! I do have some difficulties in school too. Math is really hard for me. Like it probably is for most TS girls. I do like music. Country is my favorite. Country 92.5 is my favorite station. I won a lot of awards in elementary school (I go to Saint Joseph's High School now) so that makes me, my mom , and my dad very happy!! I do have some hearing problems and I can still hear well , but my ears usually get ear infections. Lucky I haven't had one in a while! I had nine(yes, nine!) sets of tubes.

The song you will hear playing on my blog is "Wonder" , by Natalie Merchant. It was a song that told my dad I was going to be ok. I , however , seem to like the song too. I actually think of how lucky I am when I hear it. It reminds me of , well ,me! The lyrics are really similar to how my life goes. My mom was the one who told me about the song,and the whole story about my dad and the song. The lyrics are below:

Wonder:

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way


EVERY TS GIRL'S SYMPTOMS ARE DIFFERENT. I had swollen feet at birth(doctors thought it was poor circulation) , I obviously have a short stature (but with my growth hormones I will hopefully reach 5'1 or 5'2) . I have a low hairline with no webbed neck. I have had zillions of ear infections, but have been very lucky the last few years. I do have a small heart condition. It just means I need to take medication before having my teeth cleaned. My biggest challenge, I feel, is my math weakness. It's a pain in the butt!! I take an estrogen patch(on my hip) so I will be able to develop normally.

From Colleen...
I will be 15 this September, starting my sophomore year at Saint Joseph High School in Trumbull, CT. I have a 93 GPA, and work very hard at my math skills. As you know, TS women can struggle with math. I have grown to 5'2 1/2, and will be finishing GH treatment this year. The shot never was a big deal for me. My butt has been a pin cushion for 10 years! Well worth the growth! =)

I never had the hydrops, but I have the webbed neck that no one ever notices. I also had the puffy feet at birth. I've always had a positive attitude about this stuff, but every once in a while I'll feel a little different (but don't most 15 year olds feel different anyway?).

Q&A Session:

1.Did you grow up feeling different from other girls your age because of your TS?

To be honest, yes, I did feel different from other girls. What helped me was my aunt and her condition, diabetes (she's had it since she was 7).

2.What are some things your parents did to encourage you?

They treated me no different than my other siblings, a brother (17), and sister (13). They consider us all brats! lol!

3.Do you think it is important for a small child to grow up aware of her TS? Why?

YES! She is who she is, and she should be proud.....she's a survivor! My mother has always told me that I'll be lucky someday to go anywhere and pick my baby (infertility)!

4.What do you think would help moms tell the daughters about TS and its effects?

My parents have always referred to my doc appointments as "tune-ups".

5.What is one thing you'd like everyone to know about TS from someone who has grown up with it?

You're not mentally challenged, you're very, very smart! My IQ is 117!

6.Do you feel having TS has held you back in any way physically, mentally, or emotionally?

I don't like to get involved with sports a lot because of my two heart conditions. I keep fit by walking (cardio) and eating well.

7.What was your biggest fear as a child when you became aware of your TS?

That I was going to die! I know now that I could live to be a very old lady with a lot of cats! lol!

8.Do you have any heart, kidney, sight, hearing, or other health problems associated with TS?

Yes. I have the heart problems (Bicuspid Aortal Valve and Mitrovalve Prolapse), so I have to have an MRA (MRI of the heart) every couple of years. My kidneys are normal. I've also had hearing problems since birth. 9 sets of tubes have been put in! My ears have been tube free for 5 years now! My hearing is just under the normal range. No big deal!