Self-Advocacy for Better Health

Christina is a woman who has Turner Syndrome, a wife, and a teacher. In this monthly blog series, she shares her experiences living with Turner Syndrome.

This month I would like to shed some light on the open-heart surgery that I underwent last year, and how self-advocacy led to a life-saving intervention. I hope that you can learn why it is vital for Turner patients to advocate for themselves. It is important to be very upfront with your doctor about your symptoms, as you know your body better than anyone!

The Need for Self-Advocacy

I have vivid memories of my mom researching Turner Syndrome and any symptom or complication that I had. I can still hear her telling the doctors, “Here is some literature for you to read and study. If you have a Turners patient you should know about Turners.” She was the first self-advocate for my health. It is simply just reality that not many doctors know about Turners. That is why all of the resources available to us, such as the Turner Syndrome Foundation, are crucial. We can learn from each other and informed doctors by sharing experiences, studies, and research. This way we can help each other to better understand our health needs.

Rising Health Concerns

In September of 2018 the need for self-advocacy became a shocking reality to me. I had suffered through a summer of stomach pain and gastrointestinal issues, and was diagnosed with Celiac Disease. Naturally, everyone thought that my pain was due to eating food with gluten in it, along with the fact that I had only recently been diagnosed so my body was still healing and repairing itself. One night in September, as I was eating dinner, I started to feel like my throat was closing and soon I passed out. I was rushed to the emergency room where they thought I had had a stroke. After a battery of tests for a stroke they sent me home saying I probably had a virus or was dehydrated, even though they could not get a pulse on me.

After a week and starting my new school year as a teacher, I finally got my answer. I went to Urgent Care with symptoms of continued lightheadedness and fatigue. A CT scan determined that I had an aortic dissection, and I was rushed for emergency open heart heart surgery.

Lessons Learned in Self-Advocacy

This experience taught me that you have to advocate for yourself. If I had listened to the doctors who said I had a virus or was simply dehydrated, who knows where I would be today. But, I listened to my body and spoke up because what I was feeling was not normal for me. I also learned that everyone presents symptoms differently, so you really need to trust yourself. It is okay to question a doctor or present them with research. As patients who have Turner Syndrome, it is vital that we share everything we know with our doctors to increase the community of knowledge and resources.

Christina has presented a valuable lesson in self-advocacy. Listening to your body and speaking up to your health care provider is important to ensure your best possible health. You can learn more about common cardiac problems in Turner Syndrome women and girls on our website.

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