thanks so much Brooke for being such an outspoken advocate for TS girls! I am 29 years old and was diagnosed with TS at birth. it’s always wonderful to see women encouraging other women going thru similar experiences. keep the videos coming!
Brooke, I also have turners syndrome and I was diagnosed when I was 7 and I'm 11 now, this video has honestly answered things about the disability for myself as far as what it will be like when I get older so thank you for this vid!!
This was such an enlightening video, I loved your thoughts on the later diagnosis, I think you hit the nail on the head as to how I've found it! I love your videos Brooke and lm glad I found your channel 😊
Great video Brooke. Thanks. I would like to see Turner Syndrome diagnosed MUCH earlier by adding a karyotype to the newborn screening tests they do at birth. They already test for things like PKU, Maple Syrup Urine Disease, sickle cell, Cystic fibrosis and more. It would be great to see everyone with TS diagnosed in the first months of life and begin any treatment they may need.
brooke once again awsome video...I have to agree with haley in that you did get it exactly right on how it feels to be diagnosed later in life . You look at so many things differently and look back and say oh well thats what happened ,why didnt we catch it earlier. I also agree there needs to be more research done .
Hi! I am from Brazil and l was diagnosed when l was 15. I am 57 now. It was very hard for me knowing that l couldn't be a mother. I never got married. I feel lonely sometimes, but l am ok. Thanks for your vídeos!
I LOVE YOUR VIDEOS! I am years old and was born with TS. I am a Mosaic Turner's. I had my own successful small businesses and after my divorce 3 years ago I decided at the age of 42 to becom a nurse. Now officially at 45 I am an RN. I am proud you do your videos because wen I was a child of the 89's we didn't talk about this. My mother wanted to protect me from discrimination and the word syndrome carries its baggage. So kiddos to you my friend. Please contact me anytime. By the way as an RN I can tell you you can't pass it down to your offspring that is very rare. It is a beautiful genetic anomaly that forms strong girls like us❤️
How long have you had your channel? I have TS and think we have spoke on fb before? I'm thinking about making another video about my life with TS. is your channel only on TS?
+Shell Pullar I've had my channel for a few years :) it is possible we have spoken, I am apart of a couple of TS groups on fb. No my channel is not just TS. I also do daily vlogs and mental health, and random ones I think of or get asked for :)
I am 17 years old, and I also have TS. I don`t know if you will ever read this comment, but I think I might have an answer to your question. In the rare cases, in which women with TS are actually able to have a biological child, they do have a highly increased risk of giving birth to a child with a chromosomal abnormality. By far the most common would of course be Down`s syndrome, but the incidence of TS is also increased. I would not actually call this "passing on" TS though. Structurally abnormal X- chromosomes might in even rarer cases actually be passed on, I think, but generally TS is almost never inherited. The mechanisms behind the rare exceptions are probably not fully understood yet. Being diagnosed at 13 myself, I would say the question about late diagnosis is not that easily answered for everyone. On the one hand I understand how you feel about that, on the other hand I am personally thankful for having had a "normal" childhood. Doctor`s visits and predjudices are not always the best tradeoff for knowing your diagnosis, especially seeing, as TS in contrast to the other commonly screened for conditions is not in itself life- threatening. Thank you very much for making these videos and sharing information about TS!
I was born with a classic TS form. Luckily, I was born with no heart complications/ conditions. But I have very severe allergies to all smells, asthmatic bronchitis. In Ukraine endocrinology has very little to help TS girls. When I was born, the growth hormone wasn't a thing, doctors put me on insulin instead, which was horrible! I do have ptosis and a webbed neck.
I was born in 1980 and diagnosed with TS right after the birth. It was in Soviet Union, so endocrinology wasn't advanced. They were experimenting whether or not insulin would work to help me to grow more. I am 143 sm, my current weight is 60 kg. I used to be 92, could you imagine that!?
hi Brooke, my step daughter is 12 and I can't wait to show her your channel. you guys have so much in common lol. question: we just discovered she is unable to have children... her only option would to be to adopt... this will be heart breaking news to her... how would you approach this conversation?
+Amanda Seguinot awh thanks!! Can't wait for her to see! I wish I had someone to watch at that age that also had it. To start I have to ask, how did you find out? Just from the diagnosis of TS? Or has there been further testing to know what her ovarian function and development looks like? Either way, the way I would start it is by introducing other ways of having children, show her all the amazing things of adoption, show her foster care, show her she doesn't have to count on her body to be a mom and that just not being able to physically conceive in no way means she can't be a mom. My mom talked to me a lot about how it would look different for me early on, and encouraged me that there would be a ton of options by the time I was ready for kids
I am 17 years old, and I also have TS. I don`t know if you will ever read this comment, but I think I might have an answer to your question. In the rare cases, in which women with TS are actually able to have a biological child, they do have a highly increased risk of giving birth to a child with a chromosomal abnormality. By far the most common would of course be Down`s syndrome, but the incidence of TS is also increased. I would not actually call this "passing on" TS though. Structurally abnormal X- chromosomes might in even rarer cases actually be passed on, I think, but generally TS is almost never inherited. The mechanisms behind the rare exceptions are probably not fully understood yet. Being diagnosed at 13 myself, I would say the question about late diagnosis is not that easily answered for everyone. On the one hand I understand how you feel about that, on the other hand I am personally thankful for having had a "normal" childhood. Doctor`s visits and predjudices are not always the best tradeoff for knowing your diagnosis, especially seeing, as TS in contrast to the other commonly screened for conditions is not in itself life- threatening. Thank you very much for making these videos and sharing information about TS!
thanks so much Brooke for being such an outspoken advocate for TS girls! I am 29 years old and was diagnosed with TS at birth. it’s always wonderful to see women encouraging other women going thru similar experiences. keep the videos coming!
I'm mosaic and I'm healthy. Doing great.
Brooke, I also have turners syndrome and I was diagnosed when I was 7 and I'm 11 now, this video has honestly answered things about the disability for myself as far as what it will be like when I get older so thank you for this vid!!
+Aubrey Miller I'm so glad!! Don't be afraid to ask anything you are curious about!! :)
This was such an enlightening video, I loved your thoughts on the later diagnosis, I think you hit the nail on the head as to how I've found it! I love your videos Brooke and lm glad I found your channel 😊
Thanks!! I'm so glad you liked it!! It would have been a totally different experience, I cannot even imagine. Thank you!! :)
And by some miracle I got an a in a math class
That's great!!
Great video Brooke. Thanks. I would like to see Turner Syndrome diagnosed MUCH earlier by adding a karyotype to the newborn screening tests they do at birth. They already test for things like PKU, Maple Syrup Urine Disease, sickle cell, Cystic fibrosis and more. It would be great to see everyone with TS diagnosed in the first months of life and begin any treatment they may need.
Thank you!! Yes, that would be wonderful to see. I would love to see more and more girls find out earlier and get the benefits of early intervention.
brooke once again awsome video...I have to agree with haley in that you did get it exactly right on how it feels to be diagnosed later in life . You look at so many things differently and look back and say oh well thats what happened ,why didnt we catch it earlier. I also agree there needs to be more research done .
Thanks!! Yes, I feel like finding out what causes it and just more information in general could be so helpful.
Hi! I am from Brazil and l was diagnosed when l was 15. I am 57 now. It was very hard for me knowing that l couldn't be a mother. I never got married. I feel lonely sometimes, but l am ok. Thanks for your vídeos!
I LOVE YOUR VIDEOS! I am years old and was born with TS. I am a Mosaic Turner's. I had my own successful small businesses and after my divorce 3 years ago I decided at the age of 42 to becom a nurse. Now officially at 45 I am an RN. I am proud you do your videos because wen I was a child of the 89's we didn't talk about this. My mother wanted to protect me from discrimination and the word syndrome carries its baggage. So kiddos to you my friend. Please contact me anytime. By the way as an RN I can tell you you can't pass it down to your offspring that is very rare. It is a beautiful genetic anomaly that forms strong girls like us❤️
Wow thank you!! That is so nice to hear
How long have you had your channel? I have TS and think we have spoke on fb before? I'm thinking about making another video about my life with TS. is your channel only on TS?
+Shell Pullar I've had my channel for a few years :) it is possible we have spoken, I am apart of a couple of TS groups on fb. No my channel is not just TS. I also do daily vlogs and mental health, and random ones I think of or get asked for :)
I am 17 years old, and I also have TS. I don`t know if you will ever read this comment, but I think I might have an answer to your question. In the rare cases, in which women with TS are actually able to have a biological child, they do have a highly increased risk of giving birth to a child with a chromosomal abnormality. By far the most common would of course be Down`s syndrome, but the incidence of TS is also increased. I would not actually call this "passing on" TS though. Structurally abnormal X- chromosomes might in even rarer cases actually be passed on, I think, but generally TS is almost never inherited. The mechanisms behind the rare exceptions are probably not fully understood yet.
Being diagnosed at 13 myself, I would say the question about late diagnosis is not that easily answered for everyone. On the one hand I understand how you feel about that, on the other hand I am personally thankful for having had a "normal" childhood. Doctor`s visits and predjudices are not always the best tradeoff for knowing your diagnosis, especially seeing, as TS in contrast to the other commonly screened for conditions is not in itself life- threatening. Thank you very much for making these videos and sharing information about TS!
I was born with a classic TS form. Luckily, I was born with no heart complications/ conditions. But I have very severe allergies to all smells, asthmatic bronchitis.
In Ukraine endocrinology has very little to help TS girls. When I was born, the growth hormone wasn't a thing, doctors put me on insulin instead, which was horrible!
I do have ptosis and a webbed neck.
Thank you for sharing!! That's so interesting to hear they tried insulin.
I was born in 1980 and diagnosed with TS right after the birth. It was in Soviet Union, so endocrinology wasn't advanced. They were experimenting whether or not insulin would work to help me to grow more. I am 143 sm, my current weight is 60 kg. I used to be 92, could you imagine that!?
hi Brooke, my step daughter is 12 and I can't wait to show her your channel. you guys have so much in common lol.
question: we just discovered she is unable to have children... her only option would to be to adopt... this will be heart breaking news to her... how would you approach this conversation?
+Amanda Seguinot awh thanks!! Can't wait for her to see! I wish I had someone to watch at that age that also had it. To start I have to ask, how did you find out? Just from the diagnosis of TS? Or has there been further testing to know what her ovarian function and development looks like? Either way, the way I would start it is by introducing other ways of having children, show her all the amazing things of adoption, show her foster care, show her she doesn't have to count on her body to be a mom and that just not being able to physically conceive in no way means she can't be a mom. My mom talked to me a lot about how it would look different for me early on, and encouraged me that there would be a ton of options by the time I was ready for kids
I have the same Frozen cup ❄️😃
That's awesome!!! I love this coffee mug!
yes if you were mozic and there were any viable eggs in you the chances are it would have turner's too I'm like you and I searched the topic
+mai saleh thank you for sharing!
I am 17 years old, and I also have TS. I don`t know if you will ever read this comment, but I think I might have an answer to your question. In the rare cases, in which women with TS are actually able to have a biological child, they do have a highly increased risk of giving birth to a child with a chromosomal abnormality. By far the most common would of course be Down`s syndrome, but the incidence of TS is also increased. I would not actually call this "passing on" TS though. Structurally abnormal X- chromosomes might in even rarer cases actually be passed on, I think, but generally TS is almost never inherited. The mechanisms behind the rare exceptions are probably not fully understood yet.
Being diagnosed at 13 myself, I would say the question about late diagnosis is not that easily answered for everyone. On the one hand I understand how you feel about that, on the other hand I am personally thankful for having had a "normal" childhood. Doctor`s visits and predjudices are not always the best tradeoff for knowing your diagnosis, especially seeing, as TS in contrast to the other commonly screened for conditions is not in itself life- threatening. Thank you very much for making these videos and sharing information about TS!