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Living with Turner Syndrome

London

Living with Turner Syndrome

At the age of 9, I was diagnosed with Turner Syndrome, a rare genetic condition that on average 1 in 2,000 women live with. Although characterized by short stature and infertility, more uncommon characteristics of the disease include overweight or obesity.

You may be wondering how so?

One-third of all women with Turner syndrome are known to have an underactive thyroid. Hypothyroidism is characterised by a lack of hormone production, which slows the metabolism and can cause weight gain. Women living with Turner Syndrome are also at increased risk of developing type 1 and type 2 diabetes. Given that obesity is a key risk factor for diabetes, perhaps the most important, we have to make a more conscious effort’ to sustain healthy eating habits and to engage in physical activity (yoga, cycling, walking) on a regular, even daily basis.

How successful has my journey been so far?

My efforts to sustain a healthy weight have proved effective so far, and easier in my adult years perhaps. I cannot say, however, that the journey has been easy. As a child, I experienced stigma and discrimination for my height compared to peers. This not only affected my mental health but significantly impacted my relationship with food during my adolescent years. My weight fluctuated, and at times to an extent where I was even medically classified as ‘underweight’.

And my takeaway message:

The roots of obesity run deep. Although less acknowledged, genes can account for 40-70% of our risk of developing obesity. Genetic conditions even if not directly linked to weight gain, can influence one’s susceptibility to develop obesity indirectly by increasing the risk factors for the disease. Not only this, the sheer mental health consequences, and stigma one experiences can have significant consequences on one’s perception of body image and relationship with food.

I am very fortunate to have had excellent access to medical care here in the UK. Let us protect and raise awareness for women who go undiagnosed. Women often live without knowing they have Turner Syndrome, sometimes until they try to conceive. Even more so, the diagnostic procedure is incredibly complex, requiring a process of karyotyping, heart scans, blood checks, ultrasounds, and more. How many women in low-and-middle-income-countries (LMICs) are going undiagnosed, let alone where I live?

Perhaps you have not even heard of Turner Syndrome before?

The priority: we must educate and break the stigma around weight and height to protect our future generation.

Anne

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Living with Turner Syndrome

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Heart & Stroke Foundation of Barbados: World Obesity Day Webinar

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‘Creating Healthy Workplaces’ - An Employers’ Guide

Filter results by category, discover stories near you.

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Featured events and stories

Living with Turner Syndrome

Melanie’s Story

Heart & Stroke Foundation of Barbados: World Obesity Day Webinar

Marcelo’s Story

Webinar: Salvadoran Obesity Society

‘Creating Healthy Workplaces’ - An Employers’ Guide

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