In our second Twitter chat for Turner Syndrome awareness, we talked about health concerns. It was insightful to hear so many perspectives on the condition. As we learned, TS affects every woman and girl differently. There are some more common symptoms such as short stature, infertility, and cardiac issues, while even these are quite varied. However, you will see in the highlighted comments below, there are different health concerns at the forefront for each person.
We have been hosting Twitter chats weekly in the month of February. We hope to raise awareness through these conversations and also encourage connections to be formed. Please join us on Wednesday the 19th and 26th at 8pm EST to share your perspective in our Q and A!
Here are some excerpts from the chat:
Q1: What is your primary health concern related to Turner Syndrome?
- “My primary health concern is aortic dissection. I know TS women are at higher risk for it!”
- “I think my biggest health concerns are my weight and blood sugar.”
- “Cardiac is definitely a main concern. I have a bicuspid valve and had to have surgery to repair a coarctation of the aorta too. I’m also quite concerned about mental health as it seems anxiety and depression are coming across as more common.”
- “My main health concerns are autoimmune diseases. I have hypothyroidism since 13, and had a total thyroidecmy after discovering papillary carcinoma. I am also have psoriatic arthritis and epilepsy. Just knowing what to look out for if more autoimmune diseases arise.”
Q2: What is/are the most common health concerns you are aware of related to Turner Syndrome?
- “Heart issues, kidney issues, webbing (neck, fingers, toes), short stature (most common/ visible), under developed reproductive system… and these can lead to others… There’s a term called comorbidity that means something ‘comes along with’ another diagnosis, basically.”
- “I would say height being a main one. When I was diagnosed I found I just got told it affects my height but never really much more. Only until my teens I decided to do my own research into other sides of it.”
- “Heart problems, diabetes, and making decisions about starting a family with that knowledge.”
- “I know heart related issues and thyroid issues are common in TS and can be related to TS. I have TS and autism.”
Q3: Do you feel that TS is well-understood in terms of health care?
- “No because there are so many doctors that still don’t know about TS and all the health issues that go along with TS. Though, I have an endocrinologist that is so understanding of TS but there are so many girls that can’t seem to find a doctor understands TS.”
- “I think the pieces or symptoms are understood, but I’m not sure the whole picture is in focus. I think once we have a diagnosis that the pieces start making sense. It’s getting clearer though!”
- “I find a few more doctors are aware now than say 10 years ago. However, the knowledge is very limited due to not enough research in it. My gynae/endoc could tell me all about it as it’s a special interest of hers so I’m fortunate for that.”
- “I do feel understood when it comes to my healthcare although I do wish I had more knowledge about TS so that I could make the best health care choices for myself.”
Q4: Have you found it difficult to form a health care team?
- “I feel like I have good individual doctors, and I just try to be as clear and honest in communication with the doctors on an individual basis.”
- “No, not really. I’m lucky enough to find a great set of doctors and healthcare team! Though I know a lot TS girls and women are not as lucky.”
- “I found it very confusing. I never understood what the different doctors where for and going between different hospitals. This is in the U.K. I felt I struggled to understand as I wasn’t told enough about it growing up so was a lot to take in.”
- “No, I feel like my GP and OB/GYN handle my issues well. Good hospital networks helps make the connections for care!”
Q5: What area of health related to TS do you think is the most difficult to understand/lacks research?
- “The lack of research on the correlation between TS and autism is concerning. I have met a lot of TS women or moms of TS girls with both TS and autism like me. “
- “I would say that for me it’s more a matter of having the whole picture together at one time, as opposed to just one specific concern at a time”
- “My biggest research question is what causes TS or where does it come from. “
Q6: What would a better future for healthcare of TS patients look like to you?
- “A better future in health care for patients with TS would be to have doctors work together in a team to allow patients to get more information and make the best choices possible.”
- “Better understanding and compassion would make for a better healthcare future for TS patients!”
- “Not losing TS sisters to the health issues. That’s the heartbreaking thing.”
- “Having a special turners clinic built by my gynae/endoc and it opens in December, so I can see all my doctors in one day and they can work together in one place. I’m pretty excited! “
Q7: What is the role of awareness in improving health care for TS patients?
- “I truly believe that knowledge is power and the more awareness and information about TS that we can learn, the better health care choices both patients and doctors can make.”
- “You can’t help/ heal/ cure something you’re not aware of or don’t understand. The more you know, the more you can do. “
- “Awareness plays a very important role in getting better healthcare for patients with TS because it educates more people about TS and the related health issues!”
This was a wonderful discussion about health care and Turner Syndrome! We are thankful to every participant for sharing their perspectives in the Q and A.
The responses show a range of experiences, some women being better-served by the health care industry than others. We are very glad for those who have found quality providers who truly understand TS and their needs. A common thread was the feeling that there could be a more comprehensive understanding of Turner Syndrome.
On our website we have many pages and resources that aim to help everyone affected by Turner Syndrome understand their health better.
Additionally, our Patient Handbook on Turner Syndrome is a helpful resource for tracking your health care by knowing what steps you should take. We hope this can be a comprehensive guide to help you coordinate doctor’s visits, treatments, and more.
Finally, take a look at our website to see if there is a specialized center of care near you! This is a place that is equipped to provide care for a variety of needs of a Turner Syndrome patient. Often times, they have specific clinic days in which you can see most of your doctors on one day!
We hope you have learned from these perspectives on health care from Turner Syndrome women. We invite you to participate in the Twitter chats that will take place in February and beyond!
Sadly I lost my childhood friend because of her Turner related heart and kidney problems. She was diagnosed in the 1970’s when less was known and families didn’t talk about “such problems.” It wasn’t until she was well into her 40’s that she really acknowledged that her health problems were related to Turner syndrome. There needs to be much greater awareness. Just curious are there any clinical trials going on related to Turner’s?
We are very sorry to hear about the loss of your dear friend. We agree that awareness does make a large difference in the opportunities and outcomes for those who have Turner Syndrome.
Studies for Turner syndrome may be found on the TSF webpage dedicated to all TSF research. https://turnersyndromefoundation.org/research/. You will find a number of study opportunities including http://www.TSRX.us, blood and tissue banking, and also a link to Clinicaltrials.gov. where you can search the term Turner Syndrome for a list of completed and recruiting studies.
We hope this helps. If you have any further questions, please contact us at email@example.com