Receiving a diagnosis of Turner syndrome in adulthood is more than likely a big surprise.  The good news is that you now have answers to some of those questions that never seemed to make sense to you.  As some say, “the puzzle pieces now all fit into place!”  On the other hand, you may have feelings of ambivalence.  There are people that have had all the feelings that you are feeling and enjoy talking to others that have lots of questions about the diagnosis and what it really means for them.

 

We have supportive and knowledgeable volunteers that want to share their stories with you as well as help you on your journey of learning about TS.  Please contact our office at 800-365-9944 or email: tssus@turnersyndrome.org and a volunteer will contact you directly.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Frequently Asked Questions

 

Q: Will my life be shortened because of TS?

A: No. Currently the causes of death related to TS are not specific to TS IF you follow the recommended guidelines and receive proper healthcare. Please refer to the TS: A Guide for Families, for specific information related to the screenings that are advised and at what age.

 

Q: What is the oldest documented age of someone with TS?

A: We’re not sure, but we have received quite a few calls from women in their 70’s. Some were recently diagnosed, while others were diagnosed years ago but just wanted to call and talk to us. We understand that the best advice often comes from peers in your own age group so we have been coordinating groups for 50+ and 60+ years of age. We’re always open to new ideas.

 

Q: Do I really need to get a full health workup if I feel fine? It’s expensive and I don’t have insurance.

A: Yes. Please get all recommended screenings, as it may be vital to your well-being. You could have underlying issues even though you feel fine. Some hospitals and doctors will work out a payment plan if you cannot afford the screenings. There may be some financial assistance for necessary procedures through foundations our Society is aware of. Please let us know if you need assistance.

 

Q: Will insurance help pay for fertility needs such as IVF?

A: It depends on your insurance.