Turner Syndrome and Life Expectancy: Tips for Maintaining Longevity

We know that TS patients and their loved ones have a lot of questions about how TS can impact life expectancy. We at the Turner Syndrome Foundation (TSF) recognize that this is a sensitive topic for those living with Turner syndrome (TS). As you read through this post, it is important to remember that TS is a variable condition. Each individual with TS will experience different health concerns, and some may have very few. You CAN live a long and fulfilling life with TS! 

 

Note: This article discusses serious medical issues and life expectancy and may not be suitable for younger readers. Please use discretion.

Why Talk about How TS Can Impact Life Expectancy?

Naturally, lots of TS patients and their parents have questions about whether and how the condition affects life expectancy. So it’s important to discuss it. Some TS symptoms are more commonly associated with having an impact on longevity than others. In this post, we will outline the related conditions that are consistently recognized as a cause for concern. It is important to remember that many treatments for these conditions exist, and more is being learned every day. TSF will continue to fight for earlier diagnosis and better care for TS patients. We hope that this information will assist you in monitoring your own health so you can live a long and healthy life!

Common Health Concerns with TS

Cardiovascular Disease

Cardiovascular disease is the leading cause of mortality in TS patients. In 1950, Fuchs, et al. conducted a study that evaluated 317 women with TS until 2017. Forty-one percent% of the women had congenital heart disease. The most common abnormality among them was a bicuspid aortic valve, followed by coarctation of the aorta. By the end of the study, 46 of the 317 participants had passed away. The most common cause of death among these women was a cardiovascular event. 

 

In 1986, Kenny and Tidy followed 156 TS patients for an average of 17 years. Fifteen of these women passed away throughout the duration of the study. Eight of the patients died from circulatory issues. A congenital heart anomaly was responsible for four of those eight deaths. 

The results of these two studies highlight the impact that cardiovascular disease can have on the longevity of TS patients. It is also important to mention that Fuchs, et al. concluded that aortic dissection is one of the most serious cardiac conditions that can be experienced by TS patients. 

Aortic dissection in people with TS is not extremely common. However, when it does happen, it differs from aortic dissection in the general population in two major ways. First, aortic dissection in TS patients tends to occur earlier in life. Second, the aortic dimension is usually smaller. Thus, aortic size index can be used to identify high-risk patients. A size index of 2.5cm/m2 is associated with the greatest risk in TS patients. 

Multiple factors seem to contribute to the development of aortic dissection. However, in 2007, Carlson and Silberbach found that 89% of TS patients with aortic dissection also had hypertension and/or congenital heart disease. Therefore, if a TS patient has one or both of these conditions, it might be wise to speak to a cardiologist about aortic dissection for further monitoring and treatment options.

Renal Problems

The second most common cause of mortality in TS patients is kidney issues. It has been reported that the prevalence of structural renal anomalies in patients with TS is somewhere between 25% and 43%. Some commonly observed renal abnormalities include the development of a double collecting system, missing kidney, pelvic kidney, and “horseshoe kidney.” Each of these anomalies can contribute to a urinary tract infection that spreads to one or both of the kidneys and/or a blockage that prevents normal urine flow from the kidney to the bladder. This can put the patient at risk for chronic renal impairment. It has been suggested that renal abnormalities are more common in patients with 45,X monosomy (classic TS), but renal malformations can happen with any karyotype.

Renal Disorders in TS

Elsheikh, et al. recommend that all patients receive a renal ultrasound when they are diagnosed with TS to confirm the presence or absence of a serious renal abnormality. In addition, all urinary tract infections and kidney obstructions should be taken seriously and treated until they have been completely resolved. Afterwards, TS patients and their health care providers should keep an eye out for the development of additional renal problems. In some cases, surgery can be an effective way to combat the issues that arise from some renal anomalies.

Liver Disease

Fusch, et al. named liver disease as another cause of mortality among patients with TS. It is believed that excess weight in the abdominal region, metabolic syndrome, and vascular anomalies can contribute to the development of liver disease in TS patients. Individuals with TS might be able to lower their chances of acquiring liver disease by sticking to a healthy diet, maintaining an average body mass index, and having their liver function tested on an annual basis. 

Additional Health Concerns

There are other relatively common health issues experienced by individuals with TS. These include osteoporosis, diabetes, thyroid problems, hearing difficulties, vision problems, mental health problems, high blood pressure, and autoimmune diseases (like celiac disease).

Not every TS patient will develop one or more of these conditions. However, it is important to be aware of their association with TS. If any of these issues do occur, regular health evaluations and appropriate medical interventions could positively impact a patient’s quality of life and their longevity.

According to the studies conducted by Schoemaker, et al. and Fuchs, et al., mortality in women with TS is three times higher than that of the general population. This might seem like an alarming statistic. However, Cleveland Clinic states that receiving appropriate treatments for TS symptoms can positively impact life expectancy. In other words, if TS patients keep a close eye on their physical health, then it is very possible for them to live long, fulfilling lives! Let’s look at one inspiring story.

What’s the Prognosis for TS patients?

Rita’s Story

A couple of years ago, we were fortunate to meet Rita, a now-80-year-old woman with TS, and feature her in our blog. She has experienced very few health problems, including hearing loss, horseshoe kidney, and lazy eye. She talks about her life and her experiences with TS in a very charming manner. You can enjoy Rita’s full story on our blog.  

Generations_Dissolve

TSF’s Day in the Life Series

Our Day in the Life blog posts feature a girl, a teenager, a woman, and a senior woman with TS. They share how TS affects their daily lives. This blog series is a great way to explore the stories of others and learn how TS has affected them throughout their lives. The last post summarizes the series and discusses TS throughout the lufespan. The posts in this series can be found at the links below:

What You Can Do To Live a Long and Healthy Life

As discussed above, TS can be associated with a number of health complications. Regular health checks and preventative care are necessary when it comes to maintaining good health. A number of syates have specialized centers that are dedicated to the care of TS patients. The types of specialists found at these centers include endocrinologists; psychologists; gynecologists; geneticists; nephrologists; cardiologists; ear, nose, and throat specialists; and audiologists. These medical professionals can help TS patients develop coordinated treatment plans that are tailored to their specific needs.

Woman gardening_Office of the Vice-President of the U.S.

We know that engaging in physical activity and maintaining a healthy diet is beneficial to our overall health. This may be especially true for some TS patients. A substantial amount of weight gain can exacerbate some conditions that have been associated with TS, such as diabetes and liver disease. 

Finally, it is essential to engage in self-care. Dealing with physical health challenges can evoke anxiety and fear. Therefore, it is important that we remember to take care our mental health, too. There are many different ways you can engage in self-care. Some ideas include engaging in one of your favorite hobbies, talking with individuals who love and support you, or meeting up with friends to do a fun activity. Star Sisters is a private, online community of individuals with TS and their loved ones. You can join the group today to form new bonds and share your experiences with others! Most importantly, always remember to be kind to yourself! 

Written by Haley Stambaugh, TSF volunteer blog writer, and edited by Susan Herman, TSF Blog Coordinator. Designed by Nicole Elwell, TSF volunteer blog designer.

© Turner Syndrome Foundation, 2023

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