My wife has Turners. She has a Masters degree in nursing with over 30 years of work experience. She is now 56 years old and we went to Hawaii last year to celebrate our 25th anniversary.
It makes me so mad when people encourage termination. If someone says they don't want to it's their choice so leave them alone. My nephew has down syndrome and my sister's doctor kept telling her to terminate and she was so upset by it. She just wanted her little boy no matter what. He is perfect in our eyes. He defies the odds and proves people wrong every day.
And... there is a difference between TS and Down Syndrome. Sorry if I come across as blunt, but as someone with TS, I do not like to hear my condition and DS being talked about as if they were the same. We typically don`t have an intellectual disability, for one thing. Also, ever heard of Patau or Edwards Syndrome? Probably. There are also many other genetic conditions far "worse" than Down Syndrome, and many of them, from Cri du Chat Syndrome to Rett Syndrome, there are many others from Huntington`s to Epidermolysis bullosa that are horrible in their own way. In my opinion, there are some legitimate medical reasons for abortions- and everyone has to decide for themselves what they do or do not see as a legitimate reason, BUT they have to be given information by medical professionals that is factually correct. At least with TS, misinformation is the real problem.
@@annelien3432 I wasn't saying they were similar things. I know what they are and I know they are completely 100% different things. I'd say the same for myself being someone with Lupus SLE, Ehlers Danlos Syndrome, and Marfan Syndrome. Giving the option is one thing; but constantly hassling someone over and over about something they said they were against and didn't want is another thing. Behavior like that can at time almost bully someone into making a decision they didn't want. It can make everything that's happening a lot harder, more stressful, and like the parents do not have important people like their doctors in their corner. If someone says they aren't interested the discussion should end there.
@@christineclarevilgos-mitch1955 EDS and Marfans... That's some great luck, and I imagine these two conditions don't really go well together... I wish you all the best. You are obviously right. I just don't like the whole "pro life"- "pro choice" discussion, as if "pro life" is even a thing... And I don't like refering to "children who might have been aborted" as if they were a homogenous group. Obviously, informed consent means accepting a decision for as well，as against an abortion. And doctors who are patronizing and spread misinformation really seem to be a huge problem.
I am 41 years old and am 4'9 I found out that I have Turners Syndrome when I was 7. In those days doctors didn't know much about it and they told my mom I was retarded because of turners syndrome. My heart is fine my kidneys are fine except one is smaller than the other.
This is really moving -thank you for sharing your story. It is a necessary reminder we women with Turner Syndrome have overcome so much to be here even before we are born
Have you heard my story...I didn't find out till 2013 that I had a corartation in my descending aorta. So I really have to watch to prevent discecetion. My endo or any other dr failed to get a good look at my heart when I was diagnosed. So I thought same....if I had a issue they would have told me right?...wrong! So I went into adulthood thinking I was fine. At the Dallas conference in 2013 I took advantage of the free cardiac Echo. That's how I found out. If I didn't I still wouldn't have a clue today.
+Andrea Horner oh wow!! No I had not heard your story, that's crazy. So they saw it was starting and did not say anything?? Thank God for that echo at the conference!
I remember my mom tell me that doctors said to her that I was going to short like very short ( 4'3 ), yet without any hormone treatment I grew up up to 4'11, also I had a heart problem and it was aortic dissection when I was 2 years old until now my heart is totally ok.
i am a filipina have a turner syndrome i remember when i am 7 yrs. old the norwegian support me in my medication for growth hormones through injection...and i was wondering what is my condition and now i already know thanks for this video glad to see you
brooke ....love this video..ive made it to 40 with no major health issues ...it truly is a case by case thing ...no one can predict what will happen ...😀
Theres a lot of new data about morbidity that is freaking me out. I grew up being told my heart was cleared so i would be fine (i'm 43 and hadn't had it checked since diagnosis until last month! luckily i ended up with an incredible cardiologist that cleared me) as long as I stay on top of bloodwork now im reading studies that say even without heart issues I still have a high morbidity rate. Covid was rough on me so I am especially worried about it at the moment
I have this. I have Crohn's Disease A Bicuspid Aortic Valve with an Aortic Aneurysm, that I had to have surgery for several years ago. Low Thyroid Low set ears, and bad hearing Mild neck webbing Low hairline I had a badly receded jaw, that I had reconstructive surgery for years ago.
I’m 19, 4’9 and I have Mosaic Turners syndrome sense birth. I have the heart problem coarctation of the aorta. I had surgery July 2017 and have a mechanical valve now. My kidney is horse shoe shaped as well. My eye sight is bad. I’m not sure about children in the future, I love kids and want them, but my health is so sensitive and with all the medication I don’t think it will be safe.
My wife has Turners. She has a Masters degree in nursing with over 30 years of work experience. She is now 56 years old and we went to Hawaii last year to celebrate our 25th anniversary.
Awh that’s great!!! Thank you for sharing that!!
It makes me so mad when people encourage termination. If someone says they don't want to it's their choice so leave them alone. My nephew has down syndrome and my sister's doctor kept telling her to terminate and she was so upset by it. She just wanted her little boy no matter what. He is perfect in our eyes. He defies the odds and proves people wrong every day.
There are many beautiful stories of those who were almost, and have wonderful lives now.
And... there is a difference between TS and Down Syndrome. Sorry if I come across as blunt, but as someone with TS, I do not like to hear my condition and DS being talked about as if they were the same. We typically don`t have an intellectual disability, for one thing. Also, ever heard of Patau or Edwards Syndrome? Probably. There are also many other genetic conditions far "worse" than Down Syndrome, and many of them, from Cri du Chat Syndrome to Rett Syndrome, there are many others from Huntington`s to Epidermolysis bullosa that are horrible in their own way. In my opinion, there are some legitimate medical reasons for abortions- and everyone has to decide for themselves what they do or do not see as a legitimate reason, BUT they have to be given information by medical professionals that is factually correct. At least with TS, misinformation is the real problem.
@@annelien3432 I wasn't saying they were similar things. I know what they are and I know they are completely 100% different things.
I'd say the same for myself being someone with Lupus SLE, Ehlers Danlos Syndrome, and Marfan Syndrome.
Giving the option is one thing; but constantly hassling someone over and over about something they said they were against and didn't want is another thing.
Behavior like that can at time almost bully someone into making a decision they didn't want.
It can make everything that's happening a lot harder, more stressful, and like the parents do not have important people like their doctors in their corner.
If someone says they aren't interested the discussion should end there.
@@christineclarevilgos-mitch1955 EDS and Marfans... That's some great luck, and I imagine these two conditions don't really go well together... I wish you all the best. You are obviously right. I just don't like the whole "pro life"- "pro choice" discussion, as if "pro life" is even a thing... And I don't like refering to "children who might have been aborted" as if they were a homogenous group. Obviously, informed consent means accepting a decision for as well，as against an abortion. And doctors who are patronizing and spread misinformation really seem to be a huge problem.
Thank you i am a 59 yr old woman with turners and i loved your explanations of turners
I am 41 years old and am 4'9 I found out that I have Turners Syndrome when I was 7. In those days doctors didn't know much about it and they told my mom I was retarded because of turners syndrome. My heart is fine my kidneys are fine except one is smaller than the other.
Oh wow! Thank you for sharing! Glad you found my channel :)
This is really moving -thank you for sharing your story. It is a necessary reminder we women with Turner Syndrome have overcome so much to be here even before we are born
Yes! Thank you :) I'm so glad you enjoyed it!
Have you heard my story...I didn't find out till 2013 that I had a corartation in my descending aorta. So I really have to watch to prevent discecetion. My endo or any other dr failed to get a good look at my heart when I was diagnosed. So I thought same....if I had a issue they would have told me right?...wrong! So I went into adulthood thinking I was fine. At the Dallas conference in 2013 I took advantage of the free cardiac Echo. That's how I found out. If I didn't I still wouldn't have a clue today.
+Andrea Horner oh wow!! No I had not heard your story, that's crazy. So they saw it was starting and did not say anything?? Thank God for that echo at the conference!
I remember my mom tell me that doctors said to her that I was going to short like very short ( 4'3 ), yet without any hormone treatment I grew up up to 4'11, also I had a heart problem and it was aortic dissection when I was 2 years old until now my heart is totally ok.
+Rafaela Almeida that's great! I have beaten a lot of the odds they gave me
i am a filipina have a turner syndrome i remember when i am 7 yrs. old the norwegian support me in my medication for growth hormones through injection...and i was wondering what is my condition and now i already know thanks for this video glad to see you
Glad you found those answers!
brooke ....love this video..ive made it to 40 with no major health issues ...it truly is a case by case thing ...no one can predict what will happen ...😀
Lisa Funkhouser Same thing here! Mid 40's with TS and very healthy.
its crazy how different things can be for each person but i am very thankful
+Lisa Funkhouser thank you!! Yes, that is exactly what my story shows too, you just never know what's going to happen
I have mosaic tuner syndrome🦋😊
Jasmine Bell same! I would love to get in touch, my instagram is Brianna_1141
I have ts I have a piece of one my chromosome missing
same
Theres a lot of new data about morbidity that is freaking me out. I grew up being told my heart was cleared so i would be fine (i'm 43 and hadn't had it checked since diagnosis until last month! luckily i ended up with an incredible cardiologist that cleared me) as long as I stay on top of bloodwork now im reading studies that say even without heart issues I still have a high morbidity rate. Covid was rough on me so I am especially worried about it at the moment
I have no health issue and lm a happy healthy 28yrs and I feel so so luck!!!!
That's so great!!
I have this.
I have Crohn's Disease
A Bicuspid Aortic Valve with an Aortic Aneurysm, that I had to have surgery for several years ago.
Low Thyroid
Low set ears, and bad hearing
Mild neck webbing
Low hairline
I had a badly receded jaw, that I had reconstructive surgery for years ago.
Wow, thank you so much for sharing! You are not alone
I had my cardiac workup done ✅
Doctor said it looks great ❤️🦋
😊👍
That's great!!
Thank you so much for making this video and for making clear that ts is not a death sentence... really thank you (I have also ts :) )
Thank you for watching!!! I am happy to make them.
Thanks for the hope my daughter was born with it I didn't know she had it till birth so thank you she now a month old
I am praying for you both! I am so glad my video was helpful
i have TS 2
I’m 19, 4’9 and I have Mosaic Turners syndrome sense birth. I have the heart problem coarctation of the aorta. I had surgery July 2017 and have a mechanical valve now. My kidney is horse shoe shaped as well. My eye sight is bad. I’m not sure about children in the future, I love kids and want them, but my health is so sensitive and with all the medication I don’t think it will be safe.
It is definitely a personal and individual decision. it is great that you are being very thoughtful about it!
Cuanto mide de estatura
mido 4'11 :)