hi, my name is eileen. growing up with turner syndrome (ts) was not always easy. i had a lot of self-esteem issues. because of these issues, my teenage and young adult years were difficult. at 14 – 15 while all my friends were dating and having fun, i had a hard time with dating because i felt i wasn’t worthy. this continued on to my adult life. in my early to mid twenties, seeing my friends and family get married and have children was extremely hard for me. whenever i heard of a friend or family member having a baby it felt like a punch in my gut. i would always think to myself “this is not fair, they can have kids and i can’t”. sometimes, i would even cry knowing that the prospect of having children for me was bleak at best.
in 2009, i made a decision that would change my life forever. i decided to move to las vegas to be closer to my family because of my father’s diagnosis of lung cancer. after moving to vegas, i began searching for local ts butterflies in the city. i met and became friends with kimberly gamson, also diagnosed with ts, and her husband.
in november of 2012, i was to celebrate thanksgiving with them, but that was not to be. kimberly passed away november 6, 2012 due to kidney issues. needless to say, i was shocked and very sad. her husband steve took it very hard, understandably. after her memorial, a family member of mine said, “you will never see him again.” but, something told me he was wrong.
a few days before mother’s day 2013, steve called me and asked if i wanted to go to a concert to celebrate mother’s day with him and his mother. i gladly accepted his offer. we had so much fun that night. after that, we became friends, then eventually a couple. i still ask myself, how did i get so lucky? he is an amazing person. we cannot wait to start planning our future together. we have 2 cats, gigi and cheyenne, but plan to foster and/or adopt, and hopefully move out of vegas.
to all my butterflies who think they will never find love, “that is not true.” they will appear when you least expect it.
in 2009, i made a decision that would change my life forever. i decided to move to las vegas to be closer to my family because of my father’s diagnosis of lung cancer. after moving to vegas, i began searching for local ts butterflies in the city. i met and became friends with kimberly gamson, also diagnosed with ts, and her husband.
in november of 2012, i was to celebrate thanksgiving with them, but that was not to be. kimberly passed away november 6, 2012 due to kidney issues. needless to say, i was shocked and very sad. her husband steve took it very hard, understandably. after her memorial, a family member of mine said, “you will never see him again.” but, something told me he was wrong.
a few days before mother’s day 2013, steve called me and asked if i wanted to go to a concert to celebrate mother’s day with him and his mother. i gladly accepted his offer. we had so much fun that night. after that, we became friends, then eventually a couple. i still ask myself, how did i get so lucky? he is an amazing person. we cannot wait to start planning our future together. we have 2 cats, gigi and cheyenne, but plan to foster and/or adopt, and hopefully move out of vegas.
to all my butterflies who think they will never find love, “that is not true.” they will appear when you least expect it.
my name is lauren and i was diagnosed around age 8. i had no symptoms at birth. my pediatrician told my mother i had fallen off of the growth charts and there was a good chance i had turners syndrome. i was referred to specialists at children's hospital in pittsburgh, and sure enough, his suspicions were confirmed via blood work and a karyotype. the journey of this butterfly and her family had just begun. my exact karyotype is 45, xo/46, xy,/46, x, dic (y)/47, x, dic (y) y and according to the director of the division of medical genetics at children's hospital, it is one of the less common chromosomal abnormalities found in ts. if you're gonna be unique, you might as well be super unique!
school was at times a struggle socially and during math class. i was very small and painfully shy at times. i was always in basic math classes where i struggled. fortunately, my parents were my advocates and always fought for the extra help i needed and explained to my teachers my situation. i always seemed to excel in reading and writing and would often spend my lunches and recesses reading instead of playing. i saw many specialists and underwent a lot of various tests where i always tested above average in everything except math. i count that as a win.
my parents were amazing, taking me from doctor to doctor and specialist to soecialists. i attended a growth camp sponsored by children's hospital were i networked with other ts girls and teens. they had to fight with the drug companies to make sure all the medicine i needed was covered since it was all fairly new 20+ years ago.
i also took humatrope growth hormone and reached close to 5'1". there are many petite women in my family, including my mom, so i am actually average in my own family. i had to have my ovaries removed because they were streaked and could have turned cancerous. i underwent hormone replacement therapy. to this day, knock on wood, that's the only surgery i've had. i had chronic ear infections in my eight ear as a child and have some hearing loss in that ear, but nothing that needs attention right now.
if there's something that i've learned while loving with ts, it's that we can do anything. i was always a b+ student, and i went away to college and graduated in 2004 with my bachelors degree in english professional writing and a minor in french. i also passed my drivers test (after about 8 times of failing) and got my license. i am with the man i love and work full time as a health care provider in a nursing home. i am a godmother, a sister, a daughter, a college graduate, a friend, a butterfly, and someone who will always do my best to overcome whatever obstacles are placed in front of me. i like to say i have ts but ts does not have me. it's a part of me but doesn't define me. it won't make or break me. i spent so many years depressed, ashamed and hiding the fact that i am part of the 2%. now, i am damn proud of it. i was blessed to be able to attend the tssus conference in dallas last year. i strongly recommend all butterflies and their families attend if they are able. i've networked and met so many lovely butterflies through facebook. i even have 2 sisters that have become my best friends. one lives 5 minutes away from me!!!!! i mean, is that incredible or what?? i've truly come full circle from that ashamed little isolated girl i was years ago.
please feel free to find me on facebook since i am addicted to it, or email me at miss_morrow@yahoo.com. i love meeting butterflies and their mothers. if i could tell the parents one thing about their daughter, it is that she will be normal. if there is such a thing as normal. she will have best friends and go on dates and to prom. she will have a job and maybe go to college, drive a car and even have a family of her own. don't let something as abstract as a syndrome define her. limit her, and she will be limited. if not, the world is hers to explore and enjoy.
butterfly hugs,
lauren morrow
my name is barbara and i was born a month early. i ended up staying in the hospital for two weeks to gain weight and for my lungs to develop better before i was allowed to go home with my parents. all through the years and school my grandmother would tell my mother that they needed to have me checked out because i was so small something was wrong with me. my parents always said i was made the way i am i was just smaller that nothing was wrong with me. i had several ear infections and kept bronchitis but no one checked into anything.finally in september 1996, coming close to my 16th birthday i was at my family doctor because i had another ear infection. he finally asked my mom if i had started puberty and she said no and he suggested running a karotype because he felt i may have a chromosome disorder called turners syndrome. so the following morning we went and had the blood work ran. then a few days later the family doctor called and said he suspected correctly and i did have turners syndrome.
he referred us to a pediatric endocrinologist and so we could get more information. the endocrinologist did more blood work to check my estrogen level and then asked if we would like to start me on nutrophin a growth hormone shot i would have to take daily. so we agreed, because of the timing i only ended up taking the growth hormones for a year.i did find out i have a healthy heart but my left kidney is horseshoe shaped. i was also diagnosed with diabetes type 2 four years ago also. but lost 40 pounds and got my sugar under control and am now off the oral medication.
when i got my license at almost 17 years old i decided i wanted to work. i got my first job as a cashier at a local grocery store. i continued to work through the rest of high school. i graduated with mostly a's and b's. math was a daily struggle for me but i got tutoring and did the best i would.
i've continued to work in retail and work my way up through management.
i got married to a boyfriend i had had since high school. we've now been married for 13 wonderful years. due to ts causing infertility we knew we would have to expand our family through other ways. we now are licensed foster parents and have two beautiful foster daughters whom situation has changed to being free for adoption and now will be ours forever.
ts may have changed what i would have wanted for myself but i feel i've made the best of things.
-barbara deese
