Hi! I'm Brooke. I live in the beautiful redwoods of CA with my amazing husband Andrew, and our fur kids Max (our dog), Sirius (our cat), and Alan (our parrot). What started out as a way to document planning our wedding, and saving those memories, has turned into documenting our lives, and a platform for discussing life with Turner Syndrome, mental health and our story of infertility. We hope our journey blesses you!
My 23 yr old daughter has Turner's dx at birth.. i hope she does ok in life..struggled thru school. No friends, never been on a date even. Im sad for her
Thank you for making these videos. My son and his wife are expecting their beautiful butterfly in early November. She has been diagnosed already with Mosaic Turner Syndrome. Initially it seemed as though we had no hope she would be delivered but once testing was completed, hope was restored. Many prayers and fasting have carried us all. Peaceful days to you
Im going to answer this question, the answer is yes you can live a normal life with Turner’s syndrome and you can do anything you want!!! I have turners syndrome and i can vouch for that. Ive had learning disabilies and im now excelling in university with absolutely zero accommodations
I do agree with that with you but just remind yourself the following,. You can do whatever you set you’re mind too! Don’t stop yourself from perusing your goals!!, i live a perfectly normal life now and I promise it gets better.. i went from being a special ed person in a non mainstream program in school and im now earning my BA in music in university with absolutely zero academic accommodations and excelling more than I ever have, and soon hopefully graduate school for audiology, I have my drivers license and do everything that people my age do. Im 23 years old now. You can totally live a normal life but certainly be cautious and take care of yourself and you’ll be ok!, also not to mention, those with Turner’s syndrome are extremely vulnerable to illness and diabetes and other autoimmune conditions
I have Turner Syndrome and was not diagnosed until the age of 15. I have had some health challenges however, my life in general is great. I'm horrified when i hear of them pushing parents to have an abortion. That is totally unethical..
Thank you for this Video. The premature ovarian insufficiency has been the hardest part for me. My husband and I are saving for the egg donor right.I keep hoping and praying I will just get pregnant. 😢 I have also heard of a new technology called ivg that will be available in the next 5-10 years where they can take a cell from your skin, hair or blood and turn it into an egg cell. That makes me happy that at least women in the future will be able to have that option available to them.
Thank you so much for speaking out.We just found out we are expecting a classic Turner baby in April.You are a beautiful girl who is helping alot of people.Thznk you and God Bless
I was only diagnosed a few years ago, when I was 37 or 38. I'm 40 now. I went for genetic testing in 2017 because I have had a lot of GI/GYN and Knee issues since 2004 and my parents were trying to look for a unifyning diagnosis. Even then the results showed a partial gene deletion, but I didn't find out the name for it until late 2020 or late 2021. I have Mosaic. I have been lucky in the sense that I don't have heart, liver or kidney issues. I actually had puberty on time, though I am short. I'm 5'2. I was bigger in terms of breast size, I was a D and DD for a long time. However, socially and in regards to learning disabilities, I have really struggled. I always knew I had a learning disability, but I never knew the name of it. That isolated me socially, because I was in lower level classes. I was teased by classmates and my friends made me feel isolated and like I was annoying. I was clingy and shy, I was ignored by them and they often left me out of plans. In relationships, I was told they loved me and then they would always change their minds. Often I was told I was annoying and clingy. When I started having medical struggles that made it worse because it became my identity for a long time. I have a lot of limitations. I wish I had been put into social skills classes, so I would have known how to socialize and connect properly. My physical health is being dealt with as best as they can when nothing helps gi/gyn symptoms, but my friends have made me feel awful about myself. I'm constantly told I am hard to be around. I have trouble regulating my emotions and have recently been told I have Other Borderline Personality Disorder along with anxiety and depression. Other Personality means I have some symptoms of borderline, but not all and they manifest differently for me. My parents have been supportive, but they also stonewall and don't understand me. I feel like I have no support system at all. I had one person who was my biggest supporter and we had a conflict and he triggered my abandoment wound and my emotional reaction pushed him away and I'm working on seeing if I can fix it. He was my boyfriend and only person that really consistently made me feel supported. I understand what everyone is saying about feeling alone. It is interesting to see that most were diagnosed by the time they were teens and have a lot of the symptoms of Turners, that I haven't dealt with. Fertility wasn't hard for me, because I have no pain tolerance and knew my body couldn't handle having children. I felt a little relieved when I found out, because I felt like it gave me a medical excuse. I struggle with processing and wording and I often upset people because of that. I also can't see social cues. I am too talkative and I get triggered easily because I/m very sensative. I'm sorry this is such a long comment. I would love to connect with others who have struggled socially and especially those that only recently found out they had turner's and missed out on getting socialization classes needed.
Hello! I have a classic form of Turners. I was born and raised in Ukraine, but I moved to Austria 5 years ago. Is there any way to find a Turner Syndrome related T- Shirt ? This way I could bring up the awareness of TS in Austria, by wearing T- Shirts, making Instagram and Facebook posts in Ukrainian , German, English languages on the topic.
I think this is awesome what your doing I also have Turner syndrome if you need more women to talk to or interview for your documentary I would be interested ❤
I've been married to a TS lady for 31 years now. I was 39 when we got married and she was 30. It was a first marriage for both of us. I have no regrets. She had a wonderful career as an RN.
I think it’s possible for a young lady with TS to watch this episode and project their own struggles and relationship dynamics into it. I think the episode was showing that young women with TS (or other genetic disorders that cause them to look younger than they are) could more easily become a target to someone who has a sexual predilection for minors. That fact does NOT mean that anyone that you are in a relationship with as an adult is a pedophile or a sexual deviant. As you get older and gain more experience, you see how devious predators are and to what lengths they will go to in order to satisfy their desires. With the explosion of the internet, targeting young women with TS is now possible for these creeps, and public awareness will only protect possible victims. The girl in the episode was a minor, not an adult, and her “boyfriend” had a history of predation on minors. As for the other inconsistencies regarding a woman with TS, I would agree that’s it Hollywood and they take creative license with symptoms of TS. It’s a tv-show, not a documentary. No serial killer ever chooses murderers for victims like “Dexter”, it’s just entertainment. I wouldn’t let the Law&Order episode upset you, the characters are not a representative of your life.
I have this and I'm trying to over come my fear and no one really wants to teach me. Sucks but I'm pushing forward in keep trying. You helped me. Thank you hun.
Brooke, I just found your channel. I’m desperate for good information on TS after our prenatal diagnosis! Our daughter is presenting with hydrops, cystic hygroma, pleural effusion and suspected HLHS. They told me we wouldn’t make it out of the first trimester but we are 20 weeks on Monday! I am struggling with trust for doctors because I can tell they don’t value the life of our sweet girl. I hope it’s okay if I ask what your presentations were in the womb (if any). A new butterfly is on her way, we’re trying to be as ready as we can. 🦋
I'm so glad you found my channel!! I hope you find it helpful. Each case is so unique, that you really can't compare. I only had hydrops and cystic hygroma in-utero, which is how I was diagnosed. I would certainly say do your research and be your daughters advocate to the best of your ability, but also take caution with researching on Google! Find good trustworthy sources of care guidelines and information. I love www.tssus.org or www.turnersyndromefoundation.org! I am sending prayers, and know your butterfly is strong! 🦋
Hi Brooke, I just turned 51. I have been off of HRT since I was 50. I found out that I have fibroids, so that was one reason the dr. took me off the HRT. I have not had symptoms. I am doing fine.
Iam 52 years old and have not been on hrt for decades. I don't bleed but still do get ovulation mucus fluid. This was confirmed by my Dr with pap smear. I do feel that low energy you mentioned alot. I was attributing that to low dophamine.
I didn't mean to send yet. So I what you said struck a chord because I noticed my energy levels getting worse or should I say drive. So I may see what the Dr has to say it could be a hormone shift. I feel less depressed (sad) but less motivated
Hi Brooke, good question to propose. "menopause" for me as a woman with TS was as planned as my puberty. I'm 58 and went through the process with my doctors. I was simply tapered off my HRT. I went through the process at an older age than my own mom, since I wasn't having any issues having a cycle. What was interesting to me, is that I started having hot flashes and night sweats in my late 40s, aroound the same time my mom naturally started menopause. This was in spite of not lowering my HRT at the time. When I was around 55, It was agreed that I would taper off. I then had the same symptoms as earlier, but was prepared. I stayed on my cycle later than mom, for health reasons- bone health and mood. The end result is that I am now doing fine and don't have symptoms. I am checked for bone density, and take calcium and vitamin D. I have learned that it is really good to get outside and get sunlight, as that helps the body make its own D and hang onto bone. Talk to your doctors, and definitely get second, third opinions. I find younger doctors are more open to learning and asking questions with you. Cheers, Pam
I am so glad you had such a good experience!!! Thank you so much for sharing!!! Still would LOVE to have you on the podcast if you are interested :) Email me at: ladybrookewhitney@gmail.com!! :) Thanks so much again for sharing!!!
love your videos 🥰 thank you so much for voicing these important issues!! going thru all this myself as a TS woman and trying to navigate everything can really be overwhelming at times. your videos remind me I’m not alone ❤️
You are so right about advocating for yourself. So important! My experience was supposed to be going from pediatric endocrinology to an ob/gyn who had knowledge/training in TS. I was 16-17 at the time. Although the recommended physician had knowledge, he did not have the bedside manner right for me. I have since switched to another physician, again knowledgeable about TS, and it made a difference. I've also found a good cardiac specialist.
I clicked on this because you seemed knowledgeable on a topic that I'm not at all knowledgeable in. Also you have a cute cat so you're automatically awesome in my book. Also, not Turner Syndrome related, but I had near-constant ear infections as a kid until about age 6. My mom smoked in the house, so it was probably that. I just wanted to say I can sympathize because it hurts way more than most people think.
Hi Brooke! I would love a video that talks about your favorite TS resources (books, websites, podcasts-anything). Particularly, for learning more about TS. BTW, I consider this channel my favorite resource so far! But I would like to hear your favorites:)
That's a great idea!!! Thank you!!! I will definitely add that to my list!! Thanks so much for the comment about this channel being your favorite resource :') that means so much!! I'm so glad it has been helpful!!
