Team TSF Takes Seattle!

Are you looking for a fun way to celebrate the end of the school year the whole family will enjoy?  Why not join Team TSF on June 23, 2012 for the Dodge Rock ‘n’ Roll Seattle Marathon and ½ Marathon in Seattle, WA. ? 

You and your family and friends can enjoy scenic views along a course that is perfect for any athletic ability.  Runners or walkers are welcome!  If you are not feeling athletic that day, you can donate, volunteer, or come and cheer on the event participants.  The more people to help Team TSF and Turner Syndrome Foundation Inc. spread the word about Turner Syndrome, the #1 chromosomal condition in women, the better.  Affecting 1in 2000 girls, TS is not very well known.  In fact, most patients are not diagnosed until they are about 14 years old, keeping them from important treatments and therapies. 

“I think it is also important to note that there is a spectrum of characteristics for Turners Syndrome. Doctors, teachers and parents should be informed so that these girls can receive support at an early age. It is widely known that early intervention is crucial to ensuring proper health and development,” adds Team TSF leader, Janna Fornia, whose 7-year-old daughter was diagnosed with TS in utero. 

By raising awareness of TS at events like the Dodge Rock ‘n’ Roll Seattle Marathon and ½ Marathon, the diagnosing age of patients will hopefully be lowered to at birth, which is the goal of Turner Syndrome Foundation Inc. 

“I became involved with TSF after I ran my first half marathon in Seattle. I knew I wanted to run another one and make it meaningful by joining a charity. After googling around I knew that TSF would be the perfect match. I ran the Arizona Rock and Roll half marathon with TSF and loved that I was running for something bigger than myself,” says Fornia.  “Rock and Roll races reach thousands of people and we can bring awareness to the cause and provide information while setting a healthy example for our daughters,” adds Fornia. 

For more information on how to join Fornia and Team TSF to support a good cause while having fun and exercising, or to donate or volunteer go to: 

Turner Syndrome Foundation, Inc. Website: www.TSFUSA.org

Official Event Website: http://runrocknroll.competitor.com/seattle/event-details

 www.TurnerSyndromeFoundation.org

I Never Thought I....

This is an essay I wrote for a writing contest. Unfortunately, I did not win so I decided to publish it myself here!! It is called "A Permanent Mark," I hope you enjoy!

I never thought I'd get a tattoo. Growing up I was what you might call a goody-goody. I always came right home after school and started my homework, I never stayed out late and I was always the one to volunteer to help around the house. All in all, my parents never really had
to worry about me. After a while, I started to itch for something different, to do something out of character; but what? It wasn't until college that I started flirting with the idea of getting a tattoo.
A few of my friends got tattoos in high school. I always thought they were a fascinating media of art and I loved how unique each one seemed to be; but it still wasn't something I would do. Not to mention, I was terrified of the pain that would be involved. A year or two later I started watching those tattooing shows on T.V. and suddenly, the idea of getting a tattoo didn't seem like an outrageous idea after all. I mean, through the show I realised people from all walks of life got tattoos, not just bikers and sailors. One episode even featured an eighty or ninety year old woman getting her first tattoo. Is she could do it why couldn't I? I slowly started looking on the Internet for ideas on the design. I knew I didn't want anything too big, but other than that, I had no idea. Do I want a shooting star? How about a Lilly or a sunflower? A butterfly wold be pretty. No. I soon felt I needed a design that had meaning, not just something that I picked out randomly and a thousand other people would have. Then one day there it was. The logo for the Turner's Syndrome Society of the United States, a syndrome I have lived with my entire life. It was right there on the groups website. Picture four blue arches floating next to each other in the shape of a four leaf clover. In the center of the clover are four small blue circles. I knew right away if I were to get a tattoo that would be it. It was unique and really means something to me. But would I be happy with a tattoo after twenty years, even if the design is perfect? I was still debating.
I went to my mom for advice. All she said was, you're over eighteen so it's up to you; but please get it in a place that can be covered up when you have to dress nicely." I don't think she believed I would actually go through with it. The rest of the family didn't help make the decision either; it was my best friend who finally convinced me.
She has two tattoos and assured me the pain wasn't that bad. "It feels like a bunch of tiny paper cuts and only hurts for a minute," she said. She even invited me to come with her when she got her second tattoo so I could see exactly how it is done. Sure, I have seen it done on T.V., but it's a little different in person. You feel the atmosphere, hear the needles, and see a piece of art come together before your eyes.
After all that, I still wasn't convinced it was the right choice for me, and to this day I am not sure why. to try one more time to sway me, she gave me money one Christmas to put towards my tattoo. That did it.
Finally, after a year and a half or back and forth, I went with my friend to visit a local tattoo shop on January 2, 2009. After looking at the design, the artist asked if I would like to come back at five o'clock that day and have it done. My friend, knowing how nervous I was, quickly shouted "Yes." I shyly nodded in agreement. I don't know what would have happened had she not been there. I might have put it off as long as I could, or I might have said "forget it" and walked out. I like to think, however, I would have said "yes" on my own, but we will never know.
Five o'clock came all too quickly that day. If had rice in my jean pockets I would have sounded like a rattle snake, my legs were shaking so badly waiting for him to call me into the room. but my fear and nerves were unnecessary. Like my friend promised, the pain was minimal. In fact, I mostly only felt vibrations from the needle. After about forty-five minutes, and an interesting conversation with the artist about my friend's brother, I forever bear the Turner's Syndrome logo on my lower back. The goody-goody surprised everybody.
I couldn't be happier to this day. I even went out and bought a backless bathing suit a few months later so I could show off my body art on the beach and by the pool.
I kick myself for waiting so long to get it done. More than something nice to look at everyday, it serves as a reminder for everything I've been through with Turner's Syndrome. If I can get through multiple surgeries, daily growth hormone shots, and thousands of doctors visits, I can get through anything. That is what crosses my mind every time I see the tattoo in the mirror. Not to mentions, whenever someone sees the logo and asks what it means, I can bring awareness to the little known Turner's Syndrome.
I knew in my heart that logo on me forever was exactly what I wanted; I just let my nerves get the best of me. This experience has taught me that life is too short to not follow your heart and go for what you want, no matter how scary it may be. I definitely will not wait as long for the next one!

A Sensitive Subject

You've probably heard of Down Syndrome, Tourette's Syndrome and Stockholm Syndrome, but have you ever heard of Turner's Syndrome?
Named after Dr. Henry Turner, who discovered the syndrome in the 1930's, Turner's Syndrome affects 1 in every 2,500 girls. At birth, these girls are born with part or all of their second sex chromosome missing, causing short stature, reproductive difficulties, as well as other physical characteristics and medical complications.
Those are the facts. This is the reality. Diagnosed at birth, I had multiple surgeries, including heart and kidney surgery, and a feeding tube placed in my stomach all before my first birthday. The feeding tube is long gone and I haven't had a major surgery in sixteen years but thing aren't exactly normal. For about ten years of my life I took growth hormone shots every night to help increase my height as much as possible. Good thing I didn't play M.L.B. Now at 4'11'' I am considered a tall Turner's girl!! After the shots I started taking Estrogen pills, which I will continue for the rest of my life. No hot flashes!! A few years later I added Progesterone to start my cycle. To make sure everything is going well I am followed yearly by an Endocrinologist and a Cardiologist and get blood taken before each visit, my least favorite thing. I am a hard stick.
I am not sharing all of this to evoke sympathy. Other than what I've mentioned above, I've had a normal life. I owe that to my incredibly supportive parents, sibling and extended family. In fact, I was lucky. Because each case is different, most Turner's girls are not diagnosed until they realize they have not gotten their period around the age of sixteen. By then it's too late to start growth hormone treatments. No. I am writing this to bring awareness to the little known disease. And to all the young Turner's girls: there may be times you think you can't have a normal life but don't give up. Still go for your dreams; buy those stylish jeans even if they need tailoring; join the soccer team even if all the other players are a inches taller than you; and don't be afraid to learn to drive, seats can be moved closer to the pedals.
I am stronger because of Turner's Syndrome and I wouldn't trade my life for anything.