Turner Syndrome Foundation
Turner Syndrome (TS) patients have many different health concerns to stay on top of. From yearly bloodwork to medications and cardiac check-ups, there is a lot to balance. With all the different information out there, managing a condition like TS can feel overwhelming. Since October is Health Literacy Month, let’s look at a few ways TS butterflies can take control of their health!
Health Literacy Month
The Institute for Healthcare Advancement (IHA) has been organizing Health Literacy Month every October since 1999. According to IHA’s website, it is “a time of international observance” when individuals and organizations come together and work to “expand the mission of health literacy.” So what does it mean to be personally health literate? The Office of Disease Prevention and Health Promotion describes it as “the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.”
Watch IHA’s video on personal health literacy for more information.
Take Control of TS
TS can come with many health concerns and complications to navigate. The Clinical Practice Guidelines, which can be found on the Turner Syndrome Foundation (TSF) website, call for:
- cardiac imaging and screening every five years, if there are no diagnosed heart issues (e.g., aortic dissection or bicuspid valve), and more frequently if cardiac issues exist;
- thyroid level checks;
- bone density scans;
- vitamin D deficiency screenings;
- liver function tests;
- hearing tests;
- hormone replacement therapy;
- dental check-ups;
- vision screening; and
- mental health screening.
All of these screenings are recommended at varying intervals and priorities, depending on the individual’s personal health circumstances. There are many procedures and health concerns for a patient to understand throughout their life. For more help understanding how to navigate a chronic condition, see Harvard Health Publishing’s “10 Steps For Coping with a Chronic Condition.” Some of the highlights include:
- partnering with your doctor(s) in your care,
- learning about your prescriptions,
- investing in healthy habits, and
- reaching out and building community.
While TS itself is not a chronic disease, there are many different medical and psychological issues that can arise at any point in a person’s life. It is important to monitor your personal health circumstances and be knowledgeable about the specific things you are navigating.
Be Your Own Advocate
Now for some practical steps you can take. It is easy to say “be your own advocate,” but what does that actually mean? And how do you do it? Here are some tips:
- Take advantage of all of TSF’s resources!
- From guidelines and resources, to webinars, and incredible stories from TS patients in our blog, there are so many resources on the TSF website. Don’t miss out! Peruse and bookmark any you find helpful. Specifically, check out TSF’s Patient Handbook on Turner Syndrome and Turner Syndrome: Across the Lifespan.
- Communicate with your doctor, and don’t be afraid to ask questions.
- Feeling off about something, or need a little more explanation? Don’t be shy! They are there to help and should want you to feel informed.
- Write your questions down ahead of time, and take notes during your appointments. This can help you remember diagnoses, treatments, medications, etc.
- If it makes you feel more comfortable, have a trusted family member or friend go with you to your appointments. They may think of other questions to ask or just provide moral support.
- Read up on self-advocacy
- TSF’s booklet “A Lifetime of Advocacy” has a wealth of knowledge to help you.
- Watch videos about TS and self-advocacy
- The WE Learn webinars on the TSF website cover a variety of topics on health, advocacy, and self-care.
- There is a whole playlist on the YouTube channel Butterfly TV. These videos are about being your own advocate and helping your child to do the same.
- Keep track of medical appointments, symptoms, and medications in a planner or journal.
- Join the Star Sisters online community to connect with other TS patients and families.
We hope this information helps you take control of your health. You got this!
Sources
- About Health Literacy, IHA
- October Is Health Literacy Month!, health.gov
- 10 steps for coping with a chronic condition, Harvard Health Publishing
Written by Brooke Gonsalves, TSF volunteer blog writer, and edited by Susan Herman, TSF Blog Coordinator. Designed by Jasmine Persaud, TSF volunteer blog designer.
© Turner Syndrome Foundation, 2022
