Turner Syndrome
I just want to say to all the girls out there that no matter how frustrated you get, no matter how much you might not feel like you are good enough; you are. Every person is unique - Jordan Marquez
image by: Turner Syndrome Society of the United States
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Cream of the Crop
We're the Cream of the Crop,
One out of every 2,000 are we, (at least that’s the number given to me).
Each unique in her own way with her own special qualities.
We meet at conventions, locally, internationally.
We gather, showing the world our pride.
Greeting old friends, meeting new ones, worldwide.
We learn of new inventions, new miracles, the "state of the art."
And families, parents, and spouses attend.
They give moral support.
Not many know us,
though, accept that we are small.
We achieve just as much if not more when we give it our all.
Really, only some 2 percent of us survive inside the womb to be born, to live. Although there were many bumps along the way, and still more to come, I never felt alone. I thankfully have not had as many complications so far as I know some others with Turner syndrome may have. It is my hope that by sharing my story I can help others affected by TS so that they too can realize they are so much more than a diagnosis. At 17 weeks pregnant, I received the news we would be adding a baby girl to our spunky family of three. Not only did we receive this exciting news, but we also learned our daughter had a rare chromosomal syndrome, Turner Syndrome, which in most cases there is a complete or partial absence of the second female X chromosome. Incurable, Turners is quite manageable with the correct medical team in place… For anyone diagnosed with TS or any family affected, just know that you are not alone! There is nothing in life that can hold you back from doing and being all that you want to be. TS should not be thought of as any type of hindrance, but is something that makes you even more special and unique. At 28, Turner Syndrome continues to dominate my life and now the time is right to step out from the invisible wall I seem to have built around myself. I just want to say to all the girls out there that no matter how frustrated you get, no matter how much you might not feel like you are good enough; you are. Every person is unique. Many women with high-risk pregnancies (which also includes women over 35) elect to undergo amniocentesis or chorionic villus sampling—invasive procedures that check for chromosomal abnormalities but carry with them a risk of miscarriage. Weiss says there was "no way in hell" she was going to do that. She didn't want to risk losing another baby. Well, said her doctor at her 10-week office visit, we've got this new test that checks for the most common chromosomal disorders (like Down syndrome). All it requires is a blood draw.
We're the Cream of the Crop,
One out of every 2,000 are we
(at least that’s the number given to me).
Each unique in her own way
with her own special qualities. The goal of the Turner Syndrome Foundation (TSF) is to support research initiatives and facilitate education programs to increase professional awareness and enhance medical care of those affected by Turner Syndrome. The Turner Syndrome Global Alliance (TSGA) aims to have a direct impact on the lives of girls, women, and families living with Turner syndrome (TS) by working to include TS in the national conversation on research. The Turner Syndrome Society advances knowledge, facilitates research and provides support for all persons touched by Turner syndrome. We are a UK national organisation dedicated to supporting those who have Turner Syndrome[TS] their family and friends. We aim to offer accurate and up to date information on all aspects of living with Turner Syndrome. Turner syndrome is a rare chromosomal disorder that affects females. The disorder is characterized by partial or complete loss (monosomy) of one of the second sex chromosomes. Turner syndrome is highly variable and can differ dramatically from one person to another. Affected females can potentially develop a wide variety of symptoms, affecting many different organ systems. Common symptoms include short stature and premature ovarian failure, which can result in the failure to attain puberty. Most women with Turner syndrome are infertile.Resources
We Might have Bumps Along the Way, but We don't have to be Alone Turner Syndrome Awareness Month: What these Moms Want You to Know
A Father's Inspiration
A Personal Story: My life with Turner Syndrome
Don't Be Discouraged; Live Your Spectacular Life!
This Simple Blood Test Reveals Birth Defects — And the Future of Pregnancy
Cream of the Crop Turner Syndrome Foundation
Turner Syndrome Global Alliance
Turner Syndrome Society
Turner Syndrome Support Society
NORD
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