A Doctor’s Turner Syndrome Story

Learn Dr. Mary Gwyn Roper’s story on how she was affected by TS, why she started working with TSF, her hopes for the future, and how you can help the TS community!

A Doctor’s TS Story

Dr. Roper was born in Knoxville, Tennessee.

She was diagnosed with Turner Syndrome when she was 2 years old, when her pediatrician saw she was falling off the growth curve. Luckily, her doctor knew that this is a common symptom of Turner Syndrome, and so she was sent for further evaluation and care. There, esteemed physicians who were informed about Turner Syndrome helped Roper and her family navigate through the crucial first years of Turner Syndrome care.

Seven years later, her family moved to Charlottesville, Virginia to have Roper take cadaveric growth hormone therapy under the watch of Dr. Ann Johanson. This was a popular treatment at the time for those with TS. A few years later, she excitedly participated in studies that helped scientists refine synthetic growth hormone treatments, which was a new frontier for Turner Syndrome treatment back then.

After finishing her growth hormone therapy, she began hormonal replacement therapy.

The Impact of a Doctor’s Support

Inspired by her doctors’ great care growing up which gifted her the opportunity to excel, she worked towards obtaining her medical degree throughout high school and college. Eventually, she achieved her goal in 1997, when she received her degree from the Medical University of South Carolina College of Medicine. In 2000 she began working with TS patients as a pediatric endocrinologist, and has since them loved it.

Looking back, Dr. Roper says having TS caused her a fair share of struggles as she got older. Some of them included finding age-appropriate clothes that fit her small size and dealing with social exclusion because she was “different.”

However, despite all that, she believes that because of her experiences, she can “relate to others” in a way that she couldn’t if she was just “a normal little girl” and any girl or woman with Turner Syndrome can rise above their challenges if given the chance, like her doctors did. This has given her, as she says, a “unique perspective in the ongoing knowledge of Turner Syndrome management”, as well as a huge enjoyment out of aiding TS patients.

Challenges for the TS Community

Because of her experience with TS patients, Dr. Roper has noticed many problems facing individuals with TS.

She has noticed that:

  • There is little awareness about TS, especially with pediatricians. This is bad because pediatricians are the ones that, with the awareness of TS and its common symptoms, can catch TS early in infants and children.
  •  As a result, there are few early diagnoses of Turner Syndrome, which gives less time for doctors to treat medical issues and stop them from developing into serious, life lasting problems.
  • Furthermore, she noticed that there is “…little support…” for pregnant women with TS children. This is since many doctors, especially ones like obstetricians, don’t know these women’s needs, and therefore don’t know how to prepare them for what lies ahead.
  • Thus, this causes more families to have “..unnecessary fears or concerns…” as well as a lack of counseling, preparation for their girl’s overall health care, and understanding on how TS can affect their child.
  • Additionally, Roper states that “there are too few medical insurance plans that pay for Turner Syndrome treatments.
  • Members of the TS community sometimes have poor self-confidence and social health due to a lack of, as Roper says, an “appropriate awareness and resources” that can help them.
  • A lack of understanding of the range of impacts TS can have. For example, Roper says how nonverbal learning issues related to TS can create lifelong effects for the individual, and a lack of awareness and support makes them more difficult to overcome.

Dr. Roper’s Journey with TSF

Originally, Dr. Roper first heard about TSF from one of her nurses, who met someone who worked with TSF. When she went onto their website, she was “immediately impressed” with the “amount of easily accessible resources for girls and women with TS, their families, and their physicians”.

She recently decided to become a member of TSF’s medical advisory board because she loves aiding the TS community at work and wanted to contribute more of her time to support it.

As a TSF Medical Advisory Board Member, she hopes that she can help fix the issues she mentioned above and continue helping the TS community.

Right now, she plans to:

  • Create a petition for doctors to send to legislators that helps the TS community;
  • Work with TSF to make a TS brochure that obstetricians can use to help patients having babies with TS;
  • Host an informational webinar for February 2021 TS Awareness Month with other members of TSF and doctors.

Dr. Roper’s Hopes for 2021 and Beyond

She hopes that in 2021 and beyond, together, alongside TSF, she will:

  • Build collaborative ties between endocrinologists and primary care providers;
  • Strengthen more support for the TS community;
  • Create more resources for the TS community; and
  • Increase the amount of awareness about Turner Syndrome

How to Support TSF

According to Dr. Roper, some ways that you can support TSF are:

Conclusion

Overall, Dr. Roper’s story shows how anyone with Turner Syndrome, with the proper resources and support, can be inspired to make a positive impact on the world. Additionally, her insight shows how much work there needs to be done to continue building a supportive system of people and resources that helps individuals with TS and their loved ones overcome their challenges.

We cannot do this without you. As Dr. Roper says, it is only with your support that, “we can implement projects and programs to decrease the age of diagnosis and increase resources”.

If you want to support TSF, you can become a volunteer with this link, set up a fundraiser for TSF here or donate by clicking here.

Written by Elizabeth Rivera, TSF staff and blog writer, and edited by Susan Herman, TSF volunteer blog post editor and translator.

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