Dealing with an Autoimmune Disease | Turner Syndrome Foundation

My Story: Living with an Autoimmune Disease and Other Medical Issues

This post is part of the Turner Syndrome Foundation’s (TSF) monthly blog post series My Story, which highlights the varied experiences of individuals with Turner Syndrome (TS) and their families. Coping with TS can be challenging, but dealing with other medical conditions on top of it adds another layer of concerns and treatments. Below is an account by Robyn, a 34-year-old woman with TS who was also diagnosed with hypothyroidism at 13. She discusses how she was diagnosed and how this and other medical conditions have affected her life.

As always, each person’s journey with TS is different, and their medical needs and treatments vary. This is just one person’s story. Please consult with your physicians and TSF resources to help determine what is best for you or your child.

My TS Diagnosis

Having TS has made me emotionally stronger, as I have learned how to be different while still being self-confident.

Robyn

My name is Robyn, and I was diagnosed with TS at four years old. Because of TS, I have a short stature, hypothyroidism, dental issues, and weight gain. While these are not the most severe conditions associated with TS, they have had an impact on my life. Most of the time, though, my daily life is happy and generally healthy.

Hypothyroidism

At 13 years old, my parents had my thyroid tested because I was experiencing weight gain and fatigue. My doctors diagnosed me with hypothyroidism, a condition disease commonly related to TS in which the body does not produce enough thyroid stimulating hormone (TSH). [Note: Hypothyroidism caused by Hashimoto’s Disease is an autoimmune disorder.] After an initial blood test, I went through a series of other tests as my doctors determined the correct dosage of thyroid replacement medication for me. At first, the blood draws were weekly, then monthly. Now my thyroid checks are annually. The hardest part about taking daily thyroid medication is having to take it on an empty stomach, which means an hour before or two hours after eating. At times, I also feel more tired than I might normally.

Dental Issues

I have also had dental issues, including an underbite, a crossbite, and a narrow palate (which is common in TS patients). I had to wear headgear every night for quite a while to correct the underbite. My orthodontist widened my narrow palate with a metal bar that went across the roof of my mouth, between two molars, and had a key that to turn to expand. I also wore braces to straighten my teeth and correct the crossbite.

Maintaining a Healthy Weight

I have struggled with maintaining a healthy weight since my teenage years. As for many people, gaining weight is easy, but losing it is very hard. I would love to find a weight loss program that is easy to follow and that works well, but I have yet to find it. In addition to worrying about the health risks of the extra weight, it is frustrating to have a different body shape than the rest of my family members–much more round and short.

What I’ve Learned Along the Way

Looking different from my family in height and body shape has been hard at times. But it means I learned from an earlier age that my appearance is only part of who I am.

Robyn

Having TS has made me emotionally stronger, as I have learned how to be different while still being self-confident. Looking different from my family in height and body shape has been hard at times. But it means I learned from an earlier age that my appearance is only part of who I am. Having a genetic condition and dealing with an other health challenges has taught me to more readily notice and appreciate when things are going well.

I believe I have a more well-rounded concept of who I am because I have had to overcome some challenges and accept my weight issues and height. My family and friends are very supportive, and there have been funny moments of my asking for help and acknowledging my limits but also my strengths. I am more resilient than I might have been and always try to find the good in challenging situations.

Written by Robyn, a woman with Turner Syndrome, and edited by Susan Herman, a TSF volunteer blog post editor and translator.


For other recent blog posts on dealing with autoimmune and other conditions commonly related to TS, visit TSF’s blog.

To view the recording of a recent webinar about autoimmune diseases commonly associated with Turner Syndrome, click below:

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