This week we hosted our first ever Turner Syndrome Awareness Twitter Chat. You can visit this post to learn what exactly that means. Today we want to share with you some of the stories that were shared in our conversation. We are thankful to everyone who participated for being so open and vulnerable online. It is a beautiful connection to see forming and we are excited to continue hosting these chats!
In case you missed it, you can expect to see a chat every week this month! Each Wednesday in February at 8pm EST, come to our Twitter page to follow along with a Q and A.
Now, for some excerpts from our first Turner Syndrome Awareness Twitter chat. We hope that sharing these insights from TS women, girls, and family members can increase the awareness of TS. It’s also important to gain a true understanding of the disorder from the perspective of those affected! Every female experiences TS differently, so we want to highlight those experiences. Again, thank you to everyone who contributed to this dialogue!
Q1: How/when did you receive your diagnosis of Turner Syndrome?
- “My daughter received her diagnosis at 16. She is now 17. She had not started her period and we beg for help after feeling that something was not right.”
- “I was four when I was diagnosed, but my mom knew something was different since I was born. She kept trying different doctors for four years before one pediatrician decided to test for TS and that’s when I was diagnosed!”
- “I was diagnosed at 9 days old. I had coarctation of the aorta and puffy hands and feet. The doctors had their suspicions and did a karyotype and it confirmed I had classic TS.”
Q2: What is your biggest challenge related to Turner Syndrome?
- “I think the hardest part is just feeling different from your peers and being told that you will never have children. I know infertility is a huge issue among other TS sisters!”
- “Finding the right doctors, medicine, fitness, and overall routine to make sure that I’m doing my best! It’s been a struggle in the past, but now I’m thriving and know I’m able to do anything with the support of family, friends, and doctors!”
- “Getting answers specific to what our daughter needs. The solutions and information is generalized. We need preventative and maintenance tools that works for her”
- “CAN’T REACH THE TOP SHELF!! Seriously, I’ve been blessed with very few issues. “
- “I would probably say my cardiac complications. Although there definitely are a lot of challenges but I just try to take it day by day.”
Q3: What is the biggest misconception about Turner Syndrome?
- “I think the biggest misconception of TS is that we are not strong enough to handle our own battles but we are fighters and most people don’t know how strong we are!”
- “My biggest misconception was that I was all alone. I am 1 in 2000 but I’ve found so many TS sisters to connect with on social media. There is support and community.”
Q4: What advice would you give someone receiving a diagnosis of Turner Syndrome?
- “I would tell them that everything is going to be okay. TS will not define you. TS cannot limit you! “
- “To question everything, advocate for yourself or loved one! You know what is normal for yourself or your TS loved one so stand up for yourself or them.”
- “The best piece of advice that I could give to someone receiving a diagnosis would be to get all the information that they can, make sure they get good doctors, and I also think that support groups can be an excellent resource”
- “1. To find your support system (fam, friends, drs) and know who will be there for you 2. Believe in yourself! You can do anything you put your mind to, and shine no matter what! “
Q5: Why is Turner Syndrome awareness important to you?
- “Awareness leads to early diagnosis!!”
- “Awareness is very important so girls that get diagnosed have the right support and medical care that comes with TS! We all need a great support system.”
- “Awareness is so important because the more information we have as patients is good for us to make health care choices, and also doctors who treat TS can have more information.”
- “An early diagnosis could have saved emotional stress. Helping doctors know what to look for. It has been a very long journey for our butterfly with a lot of opinions, however, it’s her story and its ok. We have a miracle baby & we want others to know they do too.”
Q6: What is your biggest goal in life?
- “To be able to live a healthy, fulfilled life that is made all the richer because of TS, where I know I can give as much love and support as I get and to follow my passions! Right now, that is exactly what I’m doing! “
- “I truly believe that life is too short to be anything but happy. Right now I am enjoying being a newlywed and I am a pre school teacher which I love.”
- “Our butterfly’s goal is to be healthy and go to college. Oh, and get her driver’s license. “
- “To be a larger public speaker about Turner Syndrome.”
As you can see, these responses display the broad range of experiences that are had within the TS community. It was inspiring to see the positivity and encouragement weaved into every exchange. There will be a lot more to learn in our future conversations talking about healthcare, advocacy, education, and more!
Make sure to join us each week in February and beyond for more Twitter chats! Follow us on Twitter to make sure you get updates. Together, we can chat to raise Turner Syndrome Awareness! #turnersyndromeawareness