by Katie Steedly Curling, PhD, Writer & Guest Blogger for TSF
Living with Turner Syndrome
I live with Turner syndrome. I was diagnosed at the age of 15. I am now almost 48. I saw the same Ob-Gyn, who guided me through my diagnosis and follow-up care from specialists, from the age of 15 to 37 when I participated in a Turner syndrome study at the National Institutes of Health. Since then, I have had to find health care across the far corners of the United States. I have had the Turner syndrome conversation more times than I care to recall. Inevitably, the first question asked by medical professionals during most doctor’s appointments is, “When was your last period?” This introduces the discussion of Turner syndrome and hormone replacement therapy immediately into our conversation. It also reveals how little, in general, the medical establishment knows about the condition. Perpetual education is part of the process. Experience has provided insight into how to navigate the confusing and frustrating waters of adult Turner syndrome health care.
Know Your Body
Make sure you know your body. Be able to provide as much information as possible about the ways in which Turner syndrome presents in your body as the condition is different for each woman. For example, have an understanding of your current bone density, fertility journey, heart and kidney condition, and hearing level. Also, a record of all past care is particularly important to have as teams of providers address specific Turner syndrome-related needs. It is always important that medical professionals know the whole story, but it is particularly helpful when living with Turner syndrome.
Find Experienced Doctors
It makes a huge difference to see doctors who regularly treat women living with Turner syndrome. This might be difficult but try to make it happen. When you see a doctor that sees women living with Turner syndrome, you don’t have to explain the basics. They will have a better understanding of the connection between Turner syndrome and conditions like infertility, menopause, osteoporosis, hearing loss, and heart and kidney issues. The older I get, the more important this is becoming.
Like finding experienced doctors, coordinating care can be complicated. After many years in the darkness of coordinating my own care, it makes a huge difference to have doctors who work within the same system. The weight of self-advocacy is lightened. From the basics of sharing records, to the more sensitive process of determining treatment plans, it helps to see doctors who work directly together. I found a regional Turner syndrome center at a large university through contacting the endocrinology department at a local university medical school. I have been a patient at the center for three years. I have been able to coordinate an annual visit during which I am seen by an endocrinologist and a cardiologist and receive bone and heart testing. Each year, specialists determine what care I need. I have to drive 5 and a half hours for my appointment and stay overnight in a hotel. It is worth every minute and mile to me. That level of communication is tremendously informative and reassuring. Talk with a local (or regional) university medical school and see what resources are available in your area.
The Good News
The good news about adult Turner syndrome care is that we are learning more and more each year, and general awareness about the condition is improving. In my personal experience over the last several decades, I have seen treatments develop for a variety of issues that particularly impact women living with Turner syndrome. That is hopeful to me. As we learn more and more about genetic conditions, in general, the Turner syndrome community benefits. Awareness increases, negative stereotypes decrease, and treatments improve. That is hopeful to me, too. The community strengthens as we get and stay healthy and share our story.
Katie shares the importance of raising awareness to improve access to care for women with TS. Request an Awareness Toolkit today and get involved in awareness efforts! What can you do to support Awareness Month this year?