Many adult women with Turner syndrome (TS) are not getting the ongoing medical care they require. This often begins during the transition from pediatric to adult care, when support tends to drop off. Too few transition programs or clinics are in place to guide this transition, and as a result, many women stop treatment altogether.
It has been argued that even in well-organized healthcare systems, it’s rare for care to continue smoothly from childhood into adulthood. This breakdown is called “drop-out,”and it means patients stop receiving the specialized care they need.
This is a serious issue that affects long-term health for women with TS, and it’s something we need to talk more about.
The Numbers Tell the Story
The statistics paint a clear picture of the problem. One study found that only 63% of women with TS were getting regular follow-up care—even though 87% of them had at least one other health condition. Another study reported that 13% weren’t getting proper medical care at all, including stopping essentia; hormone treatments like estrogen.
This is deeply concerning, especially when you consider the common health issues that are associated with TS, like hearing loss, infertility, and autoimmune conditions. These aren’t issues that go away with age—they require lifelong attention.
Where the System Falls Short
So why do so many women with TS fall through the cracks?
A big part of this issue is what happens, or doesn’t happen rather, after pediatric care ends. Many women continue seeing their primary care doctor, but do not get referred to the specialists they really need, like endocrinologists, cardiologists, or reproductive specialists.
The Clinical Care Guidelines actually recommend that pediatric endocrinologists help lead the transition into adult care, but in practice, that rarely happens.
I’ve been through this myself. At my last pediatric appointment, I was handed a packet about transitioning to adult care, but it had very little actual information and I was left with many questions. Then I moved across the country for college, and suddenly, continuing care felt almost impossible. I haven’t seen an endocrinologist since I was 18. I’m 23 now—and I know a lot of other women with TS who are in the same boat.
Another big issue is that many healthcare providers simply don’t know enough about the condition. TS care requires a team of informed specialists, but even when we try to build that team, we often end up educating our own doctors about it. Personally, I find it exhausting and, frankly, discouraging. When you feel like your care is entirely on your shoulders, it makes you wonder if it’s even worth the effort to try and keep up with it.
Where We Go From Here
We need more awareness, better transition programs, and improved education for healthcare providers.
Turner syndrome doesn’t end in childhood. The care shouldn’t either. Women with TS shouldn’t have to fight for standard, informed care.
Women with TS deserve knowledgeable providers, consistent support, and healthcare systems that don’t leave them behind at every stage of life.
If you support this mission, sign our Petition for Turner Syndrome Patient Care to stand with the community of women who deserve better care!
Sources
Turner Syndrome: transition from childhood to adolescence
Kosteria, Ioanna et al.
Metabolism – Clinical and Experimental, Volume 86, 145 – 153
Culen C, Herle M, Ertl D-A, et al. Less ready for adulthood?—Turner syndrome has an impact on transition readiness. Clin Endocrinol (Oxf). 2020; 93: 449–455. https://doi.org/10.1111/cen.14293
Streur CS, Floody EA, Lapham ZK, Sandberg DE. The transition to independence and adult care for women with Turner syndrome: Current status and priorities of 1338 women and parents. Am J Med Genet A. 2022 Feb;188(2):400-413. doi: 10.1002/ajmg.a.62564. Epub 2021 Nov 13. PMID: 34773722; PMCID: PMC8758527.
Written by Calla Norton, TSF Volunteer Blog Writer. Designed by Delvis Rodriguez, Digital Marketing Coordinator
© Turner Syndrome Foundation, 2025
