Note: This post contains sensitive information about reproductive health that may not be appropriate for younger audiences. Everyone’s journey with TS is different. Please consult with your health care provider(s) for guidance regarding your unique health issues and appropriate treatments. TSF does not take a stance on medical treatments or provide medical advice.
When seeking medical care, certain communities and individuals face different challenges and experiences. The CDC defines healthcare inequity as not having “equitable access to resources and opportunities due to unfair policies, practices, and conditions.” Factors such as race, gender, sexual orientation, age, geographic location, and socioeconomic status can impact both access to treatments and the quality of care that people receive. Women face a unique set circumstances when it comes to equity in healthcare. Many studies have documented that women do not always receive equal treatment by medical professionals, and this affects treatment outcomes. In order to improve healthcare and to ensure that all individuals receive proper treatment, it is important to understand how these inequities affect women. Women of color are especially at risk for experiencing inequalities, as well as patients of lower socioeconomic status. Improving equity in healthcare and addressing the challenges that women face is essential to making progress so that every woman has access to quality healthcare.
How Healthcare Inequity Can Affect Women with TS
Healthcare inequity is a pervasive problem around the globe, and it disproportionately impacts women. There are many reasons for this, including gender norms and poverty. An important cause, however, is inequity in research. It was not mandatory to include female participants in clinical trials until 1993, and women’s health continues to be under researched. This means that we are behind on understanding how many health conditions impact women, which naturally has delayed medical research and understanding of Turner syndrome. Subsequently, it can be challenging for doctors to understand how they can best help patients with TS. Factors such as gender, race, and socioeconomic status can exacerbate health inequality for women with TS as well. Furthermore, since TS is a spectrum condition, meaning that it affects patients differently, doctors must also keep in mind that their patient’s health path is also unique.
As it can be difficult for doctors to know how to best treat the various health issues associated with TS, accessing proper medical care can be difficult for some women. One area where this dilemma is commonly felt is reproductive health. Reproductive health is a critical component of women’s health, and unfortunately not all women have equal access to proper care in that area. For women with TS who are seeking fertility assistance, infertility treatments are extremely important. The availability of these treatments can be affected by many factors. Due to lack of reproductive endocrinologists and specialists, women in rural areas tend to have lower fertility outcomes and less access to reproductive healthcare. In addition, women of lower socioeconomic status may not be able to afford costly IVF treatments, which are often necessary for women with TS to become pregnant.
Another common concern for women with TS is cardiovascular health. Cardiovascular disease is one of the leading causes of death in women, and disparities exist between men and women with cardiovascular conditions. One of the reasons for this is that symptoms of cardiac emergencies present differently in men and women, which can lead to delays in treatment. Many women with TS may find further difficulties in accessing proper care, as TS can increase the rate of certain cardiovascular conditions that are extremely rare in other women, especially young women. Some of these conditions include a bicuspid aortic valve, hypoplastic left sided heart syndrome, and in severe cases, aortic dissections. Some women with TS are also at an increased risk of hypertension and stroke, which can be related to other conditions such as diabetes mellitus.
Nicole's Story: Health Equity and Advocating for Yourself
Nicole is a preschool teacher and TSF volunteer. As a TS advocate, she decided to share her experience with navigating the healthcare system as a woman with TS. Nicole feels as though her treatment was delayed due to her doctors feeling that her case was outside of their area of focus. Her story begins after finding out she needed a second open heart surgery to replace her aorta with a mechanical valve. Due to the cardiac risks from her hormone replacement therapy (HRT), namely birth control pills, her doctor recommended switching to a different hormone replacement option. Unfortunately, Nicole struggled to find one that worked well for her, and she began a lengthy period of trying new HRT medications that caused her to suffer from severe side effects. Nicole describes this experience by the following statement:
“My doctor and I entered a long period of trial and error with my hormonal medication. I struggled greatly during this time; each medication we tried only seemed to make things worse. I had severe hormonal symptoms, including mood swings, depression, weight gain, fatigue, and excessive menstrual bleeding. This was a very scary time for me; I didn’t feel like myself. After about 18 months of my symptoms continuing to worsen, my doctor recommended that I try a hormonal IUD (intrauterine device), to which I agreed, as I was told that the IUD would solve all of my problems and that I wouldn’t experience any menstrual bleeding. The insertion process was quite painful, but again, I was reminded by the nurses and my doctor how much better things would be from it.”
Unfortunately, the IUD did not help with Nicole’s symptoms: “I continued to suffer hormonal symptoms similar to those I had experienced before – mood swings, depression (this time causing me to seek the help of a therapist, which I was fortunate enough to have access to through my employer).” This method also caused her to suffer from excessive menstrual bleeding, causing her to need seven blood transfusions over the course of that year. These health challenges also prevented her from being able to work, and it was a very scary and stressful time for her and her husband. After much heartache, Nicole ultimately received a hysterectomy and is now doing much better. Nicole’s story is that of a woman who struggled for a very long time to find the right treatment option. Fortunately by advocating for herself and by having the support of family, she was able to get the care that she needed. All too often, women seeking healthcare face challenges and unnecessary barriers, and in Nicole’s case, these barriers can simply be posed by the general lack of medical information regarding women’s health. Nicole’s story displays the real-life implications that these challenges can have on women and their loved ones.
Takeaway: What We Can Do to Improve Healthcare Equity
There are many things that can be done to make healthcare more accessible to all communities and to ensure quality care. One important step in this goal is to acknowledge that these inequalities exist so that we as a society can move forward in addressing them. Listening compassionately to the experiences of those who have been affected by healthcare inequity will also help us to understand how and why these systemic issues exist. Ultimately, a team effort between healthcare providers and patients is necessary for increasing healthcare equity. Healthcare providers should always listen to their patients and communicate with them to find the best treatment plan for that patient. They should remain compassionate and empathetic, and should reflect on their own biases so that they can undo them. The scientific community should also do more research on women’s health generally, and on rare conditions like Turner syndrome. A better understanding of these conditions will enable doctors and medical providers to better know what signs to look out for and what treatment options will be effective.
As a patient seeking healthcare, advocating for yourself is vital to helping your healthcare team understand your needs and concerns. One way to be a great advocate for yourself is through educating yourself on your rights as a patient. Educational programs designed to help medical professionals learn about healthcare inequity will help practitioners adopt practices centered around equity and compassion.
As an individual or a group, there are lots of opportunities to be an advocate for healthcare equity and to make a true difference for women with TS. Advocacy takes many different forms, and your experience as an advocate can be tailored to your unique interests and skill sets. Legislative action is a wonderful way for advocates to invoke change at the governmental level. Currently, there is a petition through TSF that would help to bring awareness of TS to state and federal representatives, which could help to implement policies designed to improve patient care for women with TS. Patients with TS may require lifelong specialized care and support. Due to the rarity of the condition, there is a lack of both knowledge and resources for TS care. This petition would raise awareness, improve accommodations, resources, support, and insurance coverage for women with TS. You can take action today by signing the Turner Syndrome Awareness Petition to improve healthcare outcomes. Your voice matters. Please sign the petition!
What Do You Think?
Do you feel as though TS affects health equity? Why do you think so? Let us know by answering this survey so we can be better informed on how TS impacts this issue!
Written by Taylor Moore, TSF volunteer blog writer. Edited and designed by Catherine Melman-Kenny, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2023