Daily Life with Turner Syndrome
You may feel that having Turner syndrome rarely affects your day-to-day life or you may feel it creates routine challenges. Either way, the topics below include information and tips that are requested most often. Please contact us if you have information that may be helpful to others or if you cannot locate the information you are looking for. We thank each of you for supporting research studies, completing TSSUS surveys, and sharing your experiences to benefit all.
Psychological and Social Topics (psychosocial)
Studies related to anxiety or depression in girls and women with TS have not produced clear information. As we wait on evidence, we understand certain issues may relate to psychological health and social well-being.
In general, those with TS experience lower self-concept and self-esteem compared to those without TS. Unfortunately, teasing appears to be a frequent problem for those in school as well as in adulthood. They experience higher degrees of social isolation and report fewer close friendships. Those with TS are generally self-aware of their abilities and challenges but adjusting behaviors or mindsets is often difficult. Studies highlight the neurocognitive (wiring of the brain) deficits common for some people with TS. You may find the Learning and Behavior web page helpful.
A London study found women with TS felt a lack of social skills and a lack of confidence in social situations. They felt they were doing "something" wrong but lacked clarity as to what that might be. The feelings led to some form of intense anxiety, mostly agoraphobia (a fear of public spaces, hence reluctance to leave home) and associated social anxiety (10%). Others had specific phobias and intense associated anxiety resulting in panic attacks (5%), or generalized anxiety. (Turner know your body ebook- chapter 21).
If you struggle with anxiety you are not alone. Consider participating in TSSUS programs such as online sessions, support groups, attending annual conferences, and speaking to someone personally. Understanding your needs and having a supportive group of people to encourage you is important.
The Clinical Practice Care Guidelines for the Care of Women and Girls with Turner Syndrome recommendations as related to anxiety (neurocognition and behavior specifically):
Recommends (moderate evidence) that neuropsychology and allied behavioral health services are integrated into the care for girls and women with TS.
Recommend (moderate evidence) annual developmental and behavioral screenings until adulthood with referrals as indicated.
Suggest (low evidence) conducting neuropsychological assessments at key transitional stages in schooling.
Recommend (moderate evidence) academic and occupational adjustments if indicated, to accommodate learning/performance issues.
Recommend (low evidence) aiming for on-time puberty and aggressive management of predictors of hearing impairment to facilitate positive psychosocial and psychosexual adaptation.
Suggest (very low evidence) that evidence-based interventions for cognitive or psychosocial problems in other populations may be adapted to meet the needs of girls/women with TS.
Learning to drive or driving may be more difficult for you than it is for others. Driving requires the use of many functions to be performed at the same time and there are known challenges specific to those who have TS.
The information was presented at the TSSUS conference and includes a huge amount of
information and visuals including:
pre-driving activities to help someone gain valuable skills and habits to make driving easier
potential areas impacted by TS, such as vision, motor skills, reaction time, and anxiety
driving behaviors typical to TS
how to teach someone to drive (helpful for those learning, improving skills, parents, and instructors)
Considerations for Family Planning
If you ask a woman with TS what she considers the saddest part of her TS journey, she will most likely mention infertility. Infertility is a painful reality for many women with TS and we have a great support system for those dealing with emotions and sharing stories and experiences. We have many volunteers who are happy to share various ways they expanded their family, such as adoption through fostering or adoption agencies (national, international, private, and agency adoption processes).
If you are ready to speak to your doctor about fertility options, the medical information page has a section on fertility preservation options.