My Story: Becoming My Own Advocate

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The Turner Syndrome Foundation’s (TSF) My Story blog series highlights the experiences of individuals, families, and caregivers affected by Turner Syndrome (TS). Their stories have an incredible ability to inspire others and make a positive impact on the TS community. This month, Robyn shares how she dealt with Western beauty standards and turned past academic struggles into a path to help others. We also discuss hypothyroidism, a condition Robyn manages, in recognition of National Thyroid Awareness month. Robyn reminds us to be our own advocate and define our own standards of beauty.

Robyn's Story

I was diagnosed with TS when I was four years old. My pediatric dentist would not work on me until my parents got me diagnosed with whatever I had. He knew I had something different because of my jaw structure. I remember sitting for the blood draw in an office with Muppets characters. Over time, I have learned to become my own advocate and set my own standards.

Facing the Challenges of TS

Robyn & Dora

Even though I was diagnosed fairly young, my doctors didn’t suggest growth hormone therapy until it was too late. So, one recommendation is to educate yourself and advocate for appropriate care. Find a doctor you can talk to and who is willing to listen. I have hypothyroidism, so I have needed to overcome my fear of blood draws and take daily medication to manage it. Recently, my blood pressure started going up, so I had to change the birth control I had been taking to maintain a normal period. 

I also have to deal with being more literal than most people, but I have learned to handle that. That is likely because of nonverbal learning disorder (NVLD).

Confronting Societal Beauty Standards

Having TS has meant having a shorter, stockier stature than the rest of my family, which has at times made me feel insecure. My body shape does not meet the current Western standards of beauty. Actors, models, and social media all push for a female body shape that is unrealistic for me–one with an hourglass shape and slim legs. Ultimately, my stature led me to confront the Western stereotype of body beauty and try to find my own definition of beauty. 

Most of the time, I am able to remind myself that there are multiple healthy body shapes that differ from the “standard, ideal” shape. I have the hardest time when I am tired or stressed. What helps me come back to seeing my own beauty is meditating, reminding myself beauty ideals have changed over time, journaling, eating well, and trying to exercise to stay healthy.

Robyn

Accomplishments

One of the things I’m most proud of is having made it through a Master’s program in special education. I was drawn to teaching, specifically special education, because of the struggles I had with academics. I wanted to find a way to help future students have an easier time, with an understanding adult working with them. The job is tiring but rewarding, especially when the students are able to understand a concept, or I can see that they are getting the support they need.

Planning for the Future

Robyn, Dora, & Ellie

I made it through COVID and have been lucky enough to stay healthy. I’m figuring out my next steps; one thought I had was trying to publish some writing. I am still sorting out how I would get published and polishing up some of my writing pieces. 

I can’t remember exactly how I found TSF, but it has helped me connect with others with TS and be able to learn a little more through its webinars. 

TS & Hypothyroidism

January is National Thyroid Awareness Month. Issues with thyroid function are common among individuals with TS, affecting 10 to 30% of TS patients, compared to 5% of the general population. Be your own advocate and read below to learn more about thyroid disorders and other autoimmune conditions related to TS.

Symptoms

Symptoms of hypothyroidism are things women experience from time to time, making this condition challenging to detect. Dry skin, fatigue, constipation, and weight gain are common. These symptoms may seem unrelated, but they may indicate your thyroid is underactive or not producing sufficient thyroid hormone. Facial puffiness, brain fog or poor concentration, and increased sensitivity to cold may also develop. Symptoms often appear slowly over a long period of time, so hypothyroidism may not be suspected right away. Many people remain undiagnosed. 

Diagnosis

GoodRx

For those with TS, screening for thyroid function is recommended at diagnosis, even at a young age, with repeated screening through childhood. Detection of hypothyroidism in young patients

with TS is particularly important, as an underactive thyroid in childhood can inhibit brain development. Left untreated, hypothyroidism may lead to heart disease or high cholesterol. Decreased thyroid function is easily detected with a blood test, and treatment is usually synthetic thyroid hormone replacement with levothyroxine, the most commonly prescribed medication worldwide.   

The most common cause of hypothyroidism in the U.S. is Hashimoto’s thyroiditis, an autoimmune disorder. Hypothyroidism is a lifelong condition that requires regular monitoring by a medical provider to ensure treatment remains effective as thyroid function changes.

Living with Hypothyroidism

Here are some things you can do to live a healthy and happy life with hypothyroidism:

  • Ask for a Hashimoto’s thyroiditis test when decreased thyroid function is suspected or confirmed.The presence of one autoimmune disorder increases the likelihood of developing another, so it is important to know if you have an autoimmune condition. 
  • Seek medical care from an endocrinologist, preferably one familiar with TS. People experience hypothyroidism differently, even with the same TSH level, so it is important to find a provider with specialized knowledge of hypothyroidism and its treatment options.
  • Even with TSH levels within the “normal” range, your symptoms may not be fully resolved. Ask questions and advocate for yourself to receive effective treatment. Failure to sufficiently treat hypothyroidism can greatly reduce your quality of life.
verywell health

Thyroid disease is often “invisible,” especially in its early stages, with symptoms that can be difficult to identify or link together to pinpoint the cause. As Robyn shares, it is important for individuals with TS and parents/caregivers to educate themselves regarding recommended care. Knowledge enables the TS community to be its own advocate.

Share Your Story

TSF thanks Robyn for sharing her story and reminding us of the importance of being your own advocate and setting your own standards.

Every individual and family affected by TS deserves to be heard, and for those who wish to share their personal story, we provide you with this platform. Simply fill out this form on TSF’s website. You can share your first name and photos if you wish, or you can remain anonymous.

Each one of us can raise awareness by using our voice to create a better understanding of the impact TS has on our lives. When you share your story, you are enabling us to tell others about the needs of this community to seek positive change. We want to hear from you!

Written by Karen Green, TSF volunteer blog writer. Edited by Susan Herman, TSF Blog Coordinator, and Kayla Ganger, TSF Professional Membership Liaison. Designed by Jasmine Persaud, TSF volunteer blog designer.

© Turner Syndrome Foundation, 2023

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