FAQ's About TS

Everyone is curious so here are some of the most FAQ's we are asked:

Is Turner syndrome inherited?  Turner syndrome is not usually inherited in families. Turner syndrome occurs when one of the two X chromosomes normally found in women is missing or incomplete. Although the exact cause of Turner syndrome is not known, it appears to occur as a result of a random error during the formation of either the eggs or sperm.

Does “male” Turner syndrome exist?  You can find a discussion of what is and isn't TS in the 2007 Clinical Practice Guidlines for the care of girls of women with TS  on page 10 under Definition.  A geneticist wrote the following...

Unambiguous (clear) female gender is part of the definition of Turner syndrome. A source of confusion for doctors is that there are male individuals with rearrangements of theX and/or Y chromosomes that may be similar to those seen in some girls and women with TS but which may have a wider variety of effects.  If the part of the Y chromosome that includes the gene that causes the gonads (a sex gland in which gametes are produced; ovaries or testes)to develop into testes is present and at least partially functional the gonads can make enough testosterone to develop partial or complete male characteristics. 

The term "male TS" is being thrown around more and more these days for these individuals but the current thinking is that the term "gonadal dysgenesis" (meaning that the gonads are not formed normally, are more appropriate for males and that "Turner syndrome" should be reserved for females. These distinctions can be especially difficult in a preterm diagnosis or early pregnancy loss, depending on what is able to be seen on ultrasound or autopsy.

Seek out a geneticist or genetic counselor if you still have questions about your baby's specific case.

A tip from some TSSUS members: If you are confused, it's okay.  The more you learn the more confusing it may become!

 Does “male” Turner syndrome exist?You can find a discussion of what is and isn't TS in the 2007 guidelines for care of girls of women with TS at on page 10 under Definition.  {link}.Unambiguous (obvious) female gender is part of the definition of Turner syndrome. A source of confusion is that there are male individuals with rearrangements of X and/or Y chromosomes that may be similar to those seen in some girls and women with TS but which may have a wider variety of effects.  If the part of the Y chromosome that includes the gene that causes the gonads (a sex gland in which gametes are produced; ovaries or testes)to develop into testes is present and at least partially functional the gonads can make enough testosterone to develop partial or complete male characteristics. The term "male TS" is being thrown around more and more these days for these individuals but the current thinking is that the term "gonadal dysgenesis" (meaning that the gonads are not formed normally, are more appropriate for males and that "Turner syndrome" should be reserved for females. These distinctions can be especially difficult in a preterm diagnosis or early pregnancy loss, depending on what is able to be seen on ultrasound or autopsy.Seek out a geneticist or genetic counselor if you still have questions about your baby's specific case

 Does “male” Turner syndrome exist?You can find a discussion of what is and isn't TS in the 2007 guidelines for care of girls of women with TS at on page 10 under Definition.  {link}.
Unambiguous (obvious) female gender is part of the definition of Turner syndrome. 
A source of confusion is that there are male individuals with rearrangements of X and/or Y chromosomes that may be similar to those seen in some girls and women with TS but which may have a wider variety of effects.  If the part of the Y chromosome that includes the gene that causes the gonads (a sex gland in which gametes are produced; ovaries or testes)to develop into testes is present and at least partially functional the gonads can make enough testosterone to develop partial or complete male characteristics. The term "male TS" is being thrown around more and more these days for these individuals but the current thinking is that the term "gonadal dysgenesis" (meaning that the gonads are not formed normally, are more appropriate for males and that "Turner syndrome" should be reserved for females. These distinctions can be especially difficult in a preterm diagnosis or early pregnancy loss, depending on what is able to be seen on ultrasound or autopsy.Seek out a geneticist or genetic counselor if you still have questions about your baby's specific case  Is there any connection between TS and mental retardation? 

No. There is no connection between just the diagnosis of TS and mental retardation.  With no additional conditions with TS, there may be some differences in learning style that make verbal leaning come more easily, and math or spatial tasks a bit more difficult.  With determination and patience any differences can usually be surmounted or compensated for.  Turner syndrome can exist with other conditions or other genetic abnormalities which may result in a female having TS and mental retardation.   An interesting piece of history is that the first research on those with TS were only on women in institutions and those women more than likely had "dual diagnoses". 

What is the life expectancy of a woman with TS?  There is not much information on this question. However, all things being equal, there is no reason why a woman with Turner syndrome should not lead a full, productive life.  It is important though, to have competent medical care regularly. 

Is Turner syndrome considered a disability? No. Turner syndrome is not listed as a disability but some women do receive disability benefits because of associated health implications that would qualify as a disability. Gonadal dysgenesis the primary wording for use in applying for disability benefits. Very few women receive SSI because they have TS. The ones that do generally have severe hearing or sight issues or conditions related to disabilities for specific health conditions. It's highly unlikely that a woman will receive benefits simply because she has TS.  

How do I take care of myself or daughter?  First of all, you're doing a great job if you have found our website!  Read through the health care topics, give a copy of the Clinical Care Practice Guidelines to your physicians, get involved with the Society so that you can receive the lastest news such as research findings, medical news, or just opportunities to connect with others with TS needs.  We have over 100 volunteers so you should never have to worry that you have to figure out everything about TS for yourself.