In honor of Turner Syndrome Awareness Month 2026, the Turner Syndrome Foundation hosted a Patient and Parent Panel event to raise awareness and build community.
This event brought together three panelists: two women living with Turner syndrome and one mom to a daughter with Turner syndrome, in addition to the facilitator, a woman with Turner syndrome.
In this blog post, we will provide key takeaways from this discussion.
Introduction to Panelists
Stacie Pelton (Facilitator)
Stacie is a woman with Turner syndrome who was diagnosed at the age of 12. Following her diagnosis, she participated in a study in which she was one of the first people to receive synthetic growth hormone. She holds three college degrees, and is a licensed counselor.
Jean-Marie Andrews (Panelist)
Jean-Marie is the mother of a daughter who was diagnosed with Turner syndrome at birth. She has been a very strong advocate throughout her daughter’s life, and publishing a book sharing her story. She and her daughter are both volunteers with TSF, working on blog writing and graphic design, respectively.
Kaitlin Yasika (Panelist)
Kaitlin is a woman with Turner syndrome who was diagnosed at nine months old. She is a social worker, and has been very active in awareness efforts for Turner syndrome. She has hosted multiple support groups in her local community.
Carlee Ritch (Panelist)
Carlee is a woman with Turner syndrome who was diagnosed at the age of three. She has been involved with the Turner Syndrome Foundation Awareness Committee, including getting influencers to make videos for awareness month.
Why is raising awareness of Turner syndrome important?
According to Carlee, increasing awareness is important because Turner syndrome isn’t widely known. Girls can slip through the cracks, and problems can go unaddressed. Increased awareness can help these girls get the necessary specialized treatment.
Why are support groups helpful, and how would one go about hosting one?
Kaitlin shared that support groups can help spread information, and having a community of fellow TS butterflies is important because it helps you know that you’re not alone.
To host one, the first step is to find a place to host the group. Examples: libraries, doctor’s offices, places of worship, schools, hospitals, and malls.
The second step is to reach out to the Turner Syndrome Foundation and the local newspaper, and use social media to help you promote your event. It’s also important not to be discouraged if attendance is low at first.
What advice would you give other parents of a child with TS?
Jean-Marie shared that advocating for your child is the biggest thing, and never being afraid to speak up. In Jean-Marie’s words, this experience has made her “loud”, she has had to be unafraid to say what needed to be said, to question, and to correct. She encouraged participants to explore their options, and to not “let the world direct your path, or your child’s path”.
What has been your experience accessing healthcare as adult women with TS?
Carlee shared that growing up, she had an amazing team of doctors two hours away at Seattle Children’s Hospital. Transitioning to adult care was difficult, and she only saw her primary care provider for about two years. It took time to gather a team of doctors at the University of Washington hospital. Carlee has also been educating her current primary care provider about Turner syndrome.
Kaitlin shared that she traveled about an hour away to see her pediatric endocrinologist, and that the pediatrician who diagnosed her was somewhat knowledgeable about Turner syndrome. Transitioning to adult care was difficult for Kaitlin, too. However, she has had some good doctors, even having doctors offer to consult with more knowledgeable providers on her behalf. Kaitlin shared that finding doctors who are in the same group can be helpful, as can finding a Turner syndrome clinic.
Stacie added that personally she has done what she referred to as “PCP shopping.” She also shared that she was lucky to find a primary care provider with extensive knowledge about Turner syndrome.
FAQ
In the final section of the webinar, panelists responded to questions from the audience.
What are your tips for finding and accessing care?
Panelists shared that it can be challenging to speak up during doctor’s appointments, but you do sometimes have to step into the “driver’s seat.” This can include actions such as providing your doctor with a copy of the Clinical Care Guidelines. If you feel your doctor is not giving you the care you need, you can seek out a different provider. With the availability of telehealth, more options are available.
For help finding a doctor who is knowledgeable about Turner syndrome, participants were advised to search for a specialized center of care near them, which is a specific hospital that offers Turner syndrome care.
View Specialized Centers of Care
The Turner Syndrome Foundation also maintains a list of professional members, although this is not a comprehensive directory.
For information on what questions to ask doctors, the Turner Syndrome Foundation website has pages about a wide variety of topics, which could spark questions.
Do growth hormone shots affect more than just height?
Yes, growth hormone can also help with bone density, muscle mass, and metabolism. Stacie also added that growth hormone treatment is giving back something that our bodies are missing.
Should you tell your daughter about her Turner syndrome diagnosis?
Explaining the diagnosis as early as possible, in an age-appropriate way, is the best thing to do, said Jean-Marie. It is important that your child has accurate information so that they can answer questions confidently.
Is there “mild vs. severe” Turner syndrome?
Turner syndrome is referred to as a syndrome because it is a spectrum. Presentation of this condition can vary widely. No two people with Turner syndrome are the same, however, the most common effects of Turner syndrome are short stature and infertility.
What accommodations should be asked for in a 504 plan?
Carlee described how she benefitted from extra time for testing, a specific teacher for math, special pencils, a seat insert for her chair, and a stool to carry with her between classes. Katilin described how she benefitted from the use of a calculator for math tests, extra time on tests, a quieter place to take tests, and having spelling and grammar waived. Kaitlin also emphasized that it is important to keep IEPs and 504 plans because colleges can often honor most accommodations.
In summary, this event was a wonderful opportunity to hear from these inspiring women about their journeys with Turner syndrome, and their advice for those affected by the condition. Watch the event recording, and be inspired!
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