Turner Syndrome

Join the Conversation on
Turner Syndrome
247 people
0 stories
24 posts
About Turner Syndrome
Explore Our Newsletters
What's New in Turner Syndrome

Newer diagnosis

Does anybody else have turner syndrome and crohn's disease. I got diagnosed with crohn's in late Sep. 2023? I was hoping maybe other's could tell me about it's affected them and tips as to how to cope?


My Story

Hi my name is Kara Simone and I wanted to share my story. I got diagnosed at 4 years old with Agenesis of the Corpus Callosum after having a seizure and subsequently getting an MRI. I got diagnosed with ADHD in middle school and Generalized Anxiety Disorder in my early twenties.

If you don’t know what Agenesis of the Corpus Callosum (ACC) is already, it is complete or partial absence of the part of the brain that connects the two hemispheres. In some cases, ACC can be accompanied with other brain anomalies. It ranges in severity. I have Partial ACC and my case is mild, it can affect people in different ways.

Also, I was diagnosed with Mosaic Turner Syndrome at 16. A somewhat traumatic appointment with an endocrinologist and a geneticist around that time revealed problems with my fertility. I’m fine with it now though, even though I have my moments. Other than anxiety, ADHD, and Thyroid problems, my health is alright. I had my first bone density test in 2020, that’s an important to do for those of us with TS considering lack of some hormones can lead to bone issues.

Thank you for reading. I wanted to share my story because dealing with things that most effect my mental health and fertility has a huge impact on me and I want people to know they are worthy and not alone. #MentalHealth #Anxiety #AgenesisOfTheCorpusCallosum #TurnerSyndrome #Infertility #ADHD #GeneralizedAnxietyDisorder

10 reactions 5 comments

First Post!!

Welcome to the Turners Syndrome group. This is a group for girls and women who have Turners Syndrome and who are parents of Turners Syndrome. I was diagnosed at the age 10 but was not told by my parents until the age of 12. After I was able to choose what treatments to do like hormone therapies and other tests. I have low risk Turners Syndrome which includes short stature and the possibility of infertility. I have created this group because I have always struggled with my self image and want to be able to help others who are also struggling with their self image because we are all beautiful even if we look a little bit different. #TurnerSyndrome #Turner

1 reaction 1 comment