This is one of many True Story interviews in which we talk to people who have experienced interesting, challenging, amazing things. This is the story of Laurel and her Turner Syndrome diagnosis.
Tell us a bit about yourself!
I’m Laurel, I’m 25 years old, and newly married. I am a writer and a wannabe crafter. I am a bookworm and a proud nerd! I am currently trying to finish my degree in International Studies and Journalism – I may also end up doing something in social work.
I have a blog that I enjoy writing for and I am always looking for new readers. I’m adventurous and obsessed with traveling! That is me in a small nutshell!
For those of us who don’t know, could you explain Turner syndrome?
Turner Syndrome is a genetic defect that occurs in about one and every 2,500 live female births. There is no known cause as of yet. Turner Syndrome (TS) is a chromosomal condition that exclusively affects girls and women.
Turner Syndrome is a genetic defect that occurs in about one and every 2,500 live female births. There is no known cause as of yet. Turner Syndrome (TS) is a chromosomal condition that exclusively affects girls and women.
TS occurs when one of the two X chromosomes normally found in females is missing or incomplete. The syndrome is named after Dr. Henry Turner, who was among the first to describe the features in 1930.
The most common features include short stature and gonadal dysgenesis, although many organ systems and tissues may also be affected to a lesser or greater degree. The average adult height of a woman with Turner syndrome is 4’8″ but growth hormone therapy can increase final adult height. Gonadal dysgensis can cause incomplete sexual development and ovarian failure and infertility.
How old were you when you were diagnosed?
I was diagnosed at birth- thankfully the doctor knew about it and recognized a few key things and decided to run some tests. I am very blessed as my biggest problem is that I cannot have kids.
I was diagnosed at birth- thankfully the doctor knew about it and recognized a few key things and decided to run some tests. I am very blessed as my biggest problem is that I cannot have kids.
I have no heart problems and no kidney problems etc. I am ADD (though not officially diagnosed) but no learning disabilities that are sometimes common in Turner’s girls. I graduated with a 3.75 from high school and maintained a 3.5 in college.
How is Turner syndrome treated?
Hormone therapy is available and should be started around the age of puberty. For adult women IVF is available but only under serious supervision of a physician.
Hormone therapy is available and should be started around the age of puberty. For adult women IVF is available but only under serious supervision of a physician.
Does it affect your daily life?
It can. I do suffer from some social anxieties but in general my life is normal. When I was younger it did inhibit my dating life but that was only because I let it.
It can. I do suffer from some social anxieties but in general my life is normal. When I was younger it did inhibit my dating life but that was only because I let it.
Are there any benefits to having Turner syndrome?
It has given me such a huge heart for adoption! It is my purpose in life to be able to give a child a home that might not otherwise have one.
It has given me such a huge heart for adoption! It is my purpose in life to be able to give a child a home that might not otherwise have one.
What advice would you give to others who have a health diagnosis that makes them feel different?
I won’t say it is easy. The constant struggle to fit in when all you want to do is feel normal. To that I say – What is normal? Who defines normal anyway? Who are we to be in a position to make ourselves feel inferior? Live your life – love freely and let go of fear. Stop trying so hard and just live life and enjoy all the blessings it offers.
I won’t say it is easy. The constant struggle to fit in when all you want to do is feel normal. To that I say – What is normal? Who defines normal anyway? Who are we to be in a position to make ourselves feel inferior? Live your life – love freely and let go of fear. Stop trying so hard and just live life and enjoy all the blessings it offers.
As I said earlier I am very blessed. Not that there aren’t constant struggles (for example I will always struggle with my weight, another commonality), but when I compare what I have with the rest of the world I can be nothing but grateful. In a world where different is weird and people are cruel I hope my story is proof that a positive attitude can get you through anything.
I encourage people to educate themselves more and stop letting ignorance become fear and fear become violence. Turner Syndrome is not a well known disease and researchers are learning more everyday. Visit this website for more info!
Thanks so much for sharing! Do you guys have any questions for Laurel?
P.S. True Story: Getting diagnosed with MS changed my life for the better and True Story: I’m legally blind
No questions, but thank you for putting a human face and story to this. I'm a biology teacher, and I talk about human genetic disorders with my students each year. It's sometimes hard to make students realize that plenty of normal folks have genetic disorders. I'm totally bookmarking this to share next year when we reach that unit! Thank you!
I would like to point out that one in 2000 to 2500 girls means that if you teach HS bio the chances of several girls with TS being in your class over the years is pretty high. It is important to speak to the class with that in mind… ( get “Standing Tall With Turner Syndrome ” from the library)
Yes! I agree! The psychological aspect is so important!
Having grown up knowing I was probably infertile, it's really nice to see somebody else finding a bright side to that – I think if you've always factored it into your future it can be a positive thing, but that's not something people often admit. Thanks for that, Laurel.
Thank you both ladies!!! Glad I could share my story – it was scary but reading your comments i know it was the right thing to do! I am so glad it helped in even a small way!
Laurel you are wonderful! My sister was born in 1947 and was never properly diagnosed. My mother was told that she had likely contacted the measles while pregnant with my sister resulting in the many symptoms my sister struggled with. During her teenage years I remember the doctors giving her growth hormones and telling her she could never have children. They didn't know why. Of course it didn't help that we were very poor and my parents were both uneducated and unable to advocate for themselves or any of us. It was during a college class that we were studying genetic disorders when I clearly saw the similarities of TS in my sister. She married and they adopted my wonderful nephew. She was always self conscious of having no breasts. She was about 58 years old when I took her to a doctor who gave her implants in spite of the fact that her husband could care less. He was so wonderful to her. She loved her "new boobs" and my sisters (7 of us) and her friends gave her a "boobie shower". We all had a ball celebrating her "new boobs". Sexy bra's and panties. Great fun. She and my brother-in-law have now passed but her life was full and as great as anybody else's might have been. Be proud and thank you for sharing your life and encouraging others. All God's children have difficulties to deal with. But you are an inspiration just as my sister was. God Bless all of you women with TS.
I just want to high-five Laurel for her pursuit and passion for adoption~ I'll be venturing down that road since my health set me on that course as well 🙂 good on you, girl.
Hi Laurel, I too have Turners, although mine is diagnosed as Turners Mosaic. I too am infertile and went into Early Menopause at age 29.
You can read my story on my website/blog:
http://soulcuisine.co.nz/early_menopause/
Thanks for sharing 🙂
Paula
Hi, Laurel. I have TS too. I am from Lithuania (East Europe) and I want to thank you for sharing this information. I don`t think I could do that, even I creating forum for lithuanian people and writing blog in lithuanian and elglish languages! So, I liked this text 🙂
Thanks for sharing! I too have TS however only found out beginning of this year when I delivered my daughter (that's right -there is little hope but certainly not impossible) by c-section. They saw one of my ovaries was non functional (collapsed) and the other about a3rd of the size it should be! Always good to hear others stories…
hi there, did u only find out in adulthood? i am pregnant and been told identical twins and one might have turners but themore i read the symptoms the more i think i too may have it but i am 35? i struggle socially, short and broad. had ear problems etc. is this possible?
thank you for this, my daughter had the test yesterday waiting results. Good to know that it wont stop her from achieving in life.
Thank you for sharing my daughter has TS and I am trying to educate myself so I can answer her questions.
Thank you for sharing my daughter has TS and I am trying to educate myself so I can answer her questions.
You are an amazing person and I hope u achieve everything you want in life..Your story really touched my heart.Thank you for sharing.
such a inspiration! I too have turnersyndrom….
Yes, you are amazing! I was diagnosed with TS when I was 17. I have had 2 heart surgeries, but lead a full and active life!
I have TS I am 37years old and struggle with the fact I can never have children.I feel that I am not a women..women are supposed to be able to have children.I don't want to say too much just Thank You
Wow so I just came back to this post after a long time away and I am blown away. I have never really shared much of my journey with Turner's. I was diagnosed at birth and have always known that I would travel a different path than most. That just means my life wont be ordinary – thank goodness for that! I would be happy to answer any other questions or to discuss this further with anyone who would like! I can be reached at [email protected]
hi I have TS too I just wanted to thank you for showing me another bright look to it I wiosh you all the best mai from Egypt
Thank you all again for your comments. I did not expect tjis reaction at all! Feel free to email me with any questions or comments as well! Thanks to Sarah for letting me share!
Hi my unborn daughter has just been diagnose with turners thanks so much for your story we are hoping and preying she makes it she is 13 week fetus at the moment
Hi Laurel –
I have just found out that I have Mosaic TS at age 53! My new Endocrinologist decided she wanted to test me for it after only meeting me for 15 minutes! It explains a lot and now I understand everything that I've had to deal with medically since a young girl. Thank you for sharing your experience, it made me feel better.
I would love to hear your response from my comment i left and know how does Turners affect your health
I am so glad you see hope in my story. Having a great endocrinologist is critical to managing this unique disorder. Best wishes for your journey. Feel free to email me if ever you need!
God bless you; you seem eminently suited to parenthood!
Thank You! I hope someday that dream can be realized! Parenthood is certainly a blessing I hope to receive – if not through conventional means! Thank you for your sweet words!
You’re awesome! Thanks for explaining all this. 😀
Thankfully I was diagnosed with TS as a baby due to physical features like the webbed necked which I had surgery for at only 4 years of age. I also struggled with ear problems and I also have hypothyroidism which has it’s up’s and downs but am managing to live with. I have no serious medical issues like the heart and kidney problems TS women can have which I am extremely blessed and grateful for. I also had to take growth hormone therapy which I am now 5’2 which I did not think I would be. I truly believe from my own personal experience what has been the most difficult living with TS is the social aspect and maintaining relationships, and of course infertility. I am 26 now, and have 2 older brother’s who recently got married and have kids along with my cousins who are married and have kids. I don’t doubt that I wont get to experience getting married and having a family someday, believe me I want that more than anything and is becoming more of a goal then mine more than ever now, but having TS dose make that aspect of your life more challenging to say the least. I believe that women with TS have the ability to due anything they set there mine too. Yes there are more challenges and obstacles we have to endure especially when going into adulthood, but that should never stop or discourage a women with TS from living the life we want and deserve. I normally don’t leave comments nor really talk about my TS experience, but I feel now as I am getting older and am way more comfortable and open about having TS, I really want to share my experience and to inspire and help other TS girls and women out there who are reaching that age where more social aspects of turner’s comes up. Which is where I feel I am at right now.
Hi my name is Ruth, my age is 20, and I do not speak English, but I wanted to tell you that you are a hero and a source of admiration,
Your special way that complements what you are and who you are.
I also differentiated mosaic Turner syndrome, I lack certainty what the future will be with me in terms of having children, now I can, but I’m small and not married.
I am very scared and you so encouraging !!
Thanks for the inspiration,
And who you are! love you and Wishing you a happy life!
I am once again checking back in. I just wanted to express my sincerest thanks for this outpouring of love. It is inspiring me to perhaps take this story even farther afield. You ladies have no idea what you all mean to me. I am so grateful that you took the time to share your thoughts here.
Thank you! I’m considering adopting a girl with Turner Syndrome–which I was slightly familiar with because a childhood classmate had it–and your story is really encouraging.
What a blessing! I’d love for you to keep me posted! [email protected]
Hi Laurel, my name is Kareemah Shakir and I have Turner Syndrome. I’m 45 yrs old in my situation is that I’m also a diabetic.I was diagnose at birth and barely made to 5 feet. Do you have problems with your stomach?? They told me to keep an eye my heart because it tend to weaken. Did they tell you that?? Also my feet swells does your do that?? Thanks inadvance. Love your blog!!!
I have ts as well im 4’9. . i just had a colonoxpy yesterday. I have struggled with stomach problems for a long time. Heart problems is a major thing as well as the kidney for ts woman. You should always have that checked out. When you have ts you should always check in with a doctor and make sure everything is okay.
I was diagnosed with ts when i was 5 years old it has definatly has its ups and downs. I have almost every characteristic im 4’9 i took growth hormones my whole life. One of my kindeys is shaoed likr a horse shoe and doesnt work and thr other onr is fine. Hearing your story is an insperation becayse i literally dont knie anybody that struggles with what i dd. I dont work i have been on disability since i was 5 years old. I dont feel good everyday . you have such a postive attitude about everything which is what i strive to do. I just wanted you to know that just sharing your story and postivity helps a lot more than you know
Hi my name is narita I have Turner syndrome. I’m 42 years old. I have stuggled with it since birth. I’ve been bullied since I was little. I also was in special education classes. Growing up I’ve tried to fit into society . But I’ve always been scared to . I have ssocial anxiety. I knew I was different from others. Having Turner syndrome is an illness. Girls with ts need the extra support to lead a good life. At my age I never had that. So I stuggled everyday. I also have depression I have to take meds.
Its been nearly 6 years and still this is reaching people beyond my wildest dreams. Every comment is such a gem to my heart. All I’ve ever wanted is to feel known and sharing my story and hearing each of your responses has allowed me to do just that. I am so grateful to watch of you for taking the time to respond.
Oh, this makes me so happy! These sorts of connections are the whole point of this interview series! <3
Hello , just want to take a minute to thank you for educating me to the “human” side ofTurner’s Syndrome.You told your story so well , for the lay person. We can zoom over to Goggle to get the facts , for anything, anytime.The world depends on you! I wish you the best that life has to give, always! Sincerely, Nell in Milford,Connecticut ❤️
Thank you! I am so glad you were able to connect to it! I wish you the best as well !
This Is my 5th pregnancy but 4th child and i recently found out my daughter is going to be born with turner syndrome. I read your story and learned alot. I am still a little scared and nervous on what to expect when she is born.
Hi my name is Kenya.I have. I have Turner Syndrome.I am an adult now.I have had it since birth but was not diagnosed until i was a teenager by my aunt who is a doctor and was wondering why i was not developing like typical girls my age. My parents ran test and that is how we found out and its change my life sometimes i feel for the worst because i now have more underlying health issues that seems to get worse the older i get.also in shcool i was pretty much a good student who manage to get a 3.0 or above gpa average but constantly seem to be bullied.i also was in special education classes and have tried to fit into society but have fear and hang ups at times as well as constantly not being seen or taking as an adult so they tend to take advantage of me and also from from depression and bi polar disorder and have to take my medication everyday and i feel at times my family members look at me like i have the plague because im different which at times i just want to be treated like a normal person as if such a thing.As for dating and having a social life have managed to but can’t seem to keep friends because they don’t understand me and my relationships dont last because of my own insecurities with myself so up till now still not married or have kids which constantly is in the back of my mind like why but i just feel like everything is for a reason and i have special purpose to share with others.
Wow Kenya, I hear so much strength in your comment. You seem to be trying to be positive through it all which I commend you on. My health challenges have definitely evolved as well the older I get. I think it is always going to be a fight to stay as healthy as possible. I hope you find some peace and understanding especially within your family. Stay strong and I wish you the very best.
She will be fine but will be put through many hurdles and obstacles and will need a great support system in her life
It is great to know that I am not alone and understand what it is like to have Turners Syndrome. I was diagnosed at the age of 12. I am 41 now. It is a struggle especially the social aspect. Like feeling insecure everyday and feeling not good enough and normal. Having to try extra harder than others just maintain a sense of normalcy. But I know just have to keep faith, and that there is a reason why I’m born this way.
Hello and thank you for your story. I was diagnosed with ts at the age of 20 unfortunately. I only wished my parents would of gotten me tested when I was born. I knew I was different form the time I was 7 to adulthood when I noticed I wasn’t developing like a normal girl should. I was antisocial but was friendly and painfully shy. I too want to educate people on my condition because it is rare. Thank you again Nicole L
Thanks for sharing, Nicole. I understand the feeling different. I think not wanting to be different is a huge part of why I was able to “ignore” my turner’s for so much of my life – though this ultimately served nothing but to isolate myself. It is only now in my 30’s that I am really beginning to connect to my diagnosis and honor it for the unique gift and challenge that it is.
I am 56 and was diagnosed with TS at the age of 14. I was a performing musician, and worked in the music industry until my health really began to fail. I have lots of health problem, heart disease, diabetes since my 20’s, auto immune diseases like thyroid disease, psoriasis and very severe psoriatic arthritis, and extremely severe bone disease (osteoporosis) I have had lots of fractures. I have had mostly good health care, but still don’t do well. The severe arthritis has put me in a wheelchair although I can walk for short distances with a platform walker. I have chronic, unremitting pain which is really exhausting and difficult. I always knew I was different, and like most of the other posters, I have never seemed to fit in,.. not in any group. The health problems are difficult, but the hardest part of the Turner Syndrome is the isolation and the feeling that you don’t belong. I have said it’s like being an alien stuck on Earth. Isolation and loneliness and lack of social connections and friends is so much more difficult than the medical problems.
I wish everyone good luck and happiness!
Lynne I am so grateful you shared here in this space – you are certainly not alone. I totally understand the isolation. I too was just iagnosed at 32 with sever osteoporosis and had to have a bone infusion. While our struggles may be both physical and mental – there are so many ways to find connection. I finally began to embrace it and found other’s like me in my community. I encourage you to seek out resources even an online community to keep some of the isolation at bay. I wish you health and happiness and all the best!
I just got the referral for genetic testing for my 6 month old, we are specifically looking for TS. Thank you so much for your uplifting voice, it is very helpful to hear from women who have TS and haven’t let it stop them!!
Amber I am so glad you found some comfort in it. I hope you were able to get some answers and I hope they allowed you to move forward. I wish you the best.
Hi Laurel! I am so happy you are still checking comments even seven years later!
I have TS as well, mosaic with an isodicentric y chromosome. I was diagnosed at nine, now I am attending university as a biology major. I graduated high school at the top of my class, with a 4.5 GPA. I definitely struggle with math, physics, and chemistry concepts- it takes me a minute to think through everything. I took the regular track math and physics classes in high school. The hardest class I have ever taken was AP Chemistry-and I hope against all hope that will not change :). I would literally spend at least 10 hours a week on that class.
I was thoroughly intrigued when my biology classes taught genetics and I felt like I finally understood my condition better! I soaked it all up and began to really like genetics. It was crazy though- in my biology classes, whenever a teacher would mention TS I would become red in the face, my heart would beat fast, and I would be so scared that someone might notice that I matched some of the symptoms. Luckily I am very blessed and only have minor symptoms- infertility, 5’0 tall, a little broad, no development, perhaps a little socially awkward, etc. My infertility did also ignite a desire to adopt a child someday. I have read a lot about the genetic implications and risk factors associated with our disorder. It really does make everything come together.
As far as social consequences, I have always been treated like a child, and especially within my family, have had demeaning comments from aunts and cousins for my lake of maturity- figuratively and physically. Many of my aunts have asked about my stature and lack of development, which is frustrating, because I wish they would see past my height. I always wanted to be seen as more, as older, as a normal girl. I used to suffer immensely from the feeling of inadequacy that comes with family asking in hushed whispers and sometimes to my face, why I look like a child despite my age; as well as being infertile, but today I could not be happier with who I am. I do not care anymore. I just feel extremely blessed to be healthy, even if children have to ask someone else to verify my age if they ask at a social function.
I really enjoyed reading your narrative Laurel! It is so great to read all of your experiences guys. Thank you all for sharing. I know it can be VERY hard and uncomfortable to share your experience.
I can totally relate to wanting to be seen as older (I looked 12 in my first drivers license picture, lol). Thank you for sharing yor story as well. It is so rewarding and exhilarating to find a community where your story is heard and validated. You seem to also have such a positive vibe and I wish nothing but light and love!
Hi Laurel! I’m Shamonya. I just wanted to reach out because I was born with Turner Sydrome as well and I find your story truly inspiring. Just like you, I have no heart or kidney problems etc, in which I am very blessed and so are you. I am 21 years old, currently in college and I’m studying Journalism and I want to do photography on the side. I’m struggling with the fact that I am not able to concieve a child. I’m praying that maybe someday there will be a miracle and I will be able to. I’m worried that the person who I could potentially see myself with might turn away and leave… due to not being able to concieve. How did you deal with this(get throught it)? And how was you able to the tell the person you’re with that you wasn’t able to concieve….please help I need answers…Thanks!
Hi Shamonya. Thank you so much for being so vulnerable. I definitely struggled to date knowing that I could end up having my heart broken by someone not willing to embrace all of me – including infertility. But here is the thing – the right person will take your hand and walk with you through it. I was very honest with my husband when we first started dating as I owed it to him, and to myself, to let him know what he was getting with me. This to me was so important. If he didn’t want to continue the relationship if I couldn’t have kids better to know it then and not after we were married. I hope you find some peace in knowing while biological children may not be your path there are so many children waiting for you to chose them. I wish you all the best.