Turner Syndrome Foundation
Managing a chronic condition like Turner syndrome (TS) can be challenging, especially as a young adult transitioning from pediatric to adult care. Let’s talk about taking control of your condition, developing a support system, and advocating for your own healthcare. The Turner Syndrome Foundation (TSF) and other organizations have resources that can help!
Managing a Chronic Condition Like TS
Let’s face it; living with a chronic, rare condition like TS is challenging. You might feel isolated or not in control of some parts of your life. While TS itself is not an “illness” or “disease,” it does come with a varied number of medical conditions that must be managed throughout the lifespan. But there are ways to take control and manage these feelings, like joining a support group for TS or other chronic conditions. Having a strong support system and knowing you are not alone can make a world of difference!
“ …[Having a chronic condition] feels like it takes away a lot of what we can control, but finding community and peer support is something we can control.”
About Generation Patient
Sneha Dave and Sydney Reed are the founders of Generation Patient, an advocacy and support group for young adults with chronic conditions. Its goal is to empower patients to advocate for themselves and others like them. Sneha was diagnosed with ulcerative colitis in elementary school, which prompted her to reach out to other people with chronic conditions. She is also the founder of Health Policy Lab, a program of Generation Patient dedicated to educating young people about drug-pricing regulation.
Sneha has testified before Congress, appeared on C-SPAN, and has written for U.S. News and World Report. She says, “Obviously there is a sense of loss of control to a certain degree, but connecting with other people who have chronic [conditions] and learning how they succeed in life can be very empowering.”
Sydney Reed, Sneha’s co-director, is currently a Chronic Disease Coalition peace envoy and a rare disease legislative advocate. Sydney is a digital illustrator and contemporary artist who uses mixed media to create pieces that reflect her experience with having a chronic condition.
The Importance of Advocacy
It is very common for patients to feel overwhelmed when they are first diagnosed with TS. For people with this condition, there are numerous tasks that need to be done, such as keeping up with insurance coverage, medical appointments, and medication refills. Fortunately, there are ways to help make navigating TS less stressful. Advocacy for patients and families dealing with chronic conditions allows individuals to connect and learn how to articulate what they are experiencing to others who wouldn’t necessarily understand what they’re going through. Read more about TSF’s advocacy efforts.
Don’t Be Afraid To Dream Big!
We should all dream big when it comes to health advocacy, because many of us are facing similar challenges. We have the potential to share our experiences with other people. Advocating for better educational resources in your state with friends who need these plans for their education is one idea that could help
make butterflies’ lives easier. Additionally, many families in the TS community face challenges paying for growth hormone therapy. There are many petitions to regulate drug pricing, and the more people who sign, the sooner the dream of having reasonably priced drugs available to everyone can become a reality.
One simple step you can take is to sign TSF’s Petition for TS Patient Care, to encourage legislators to improve healthcare for those with TS and declare February National TS Awareness Month. When you sign the petition, you can automatically send a letter to your legislators.
Advocacy can be as big as spreading the word to government entities, or as small as learning the words to explain what you’re going through to your family and doctors. Advocating for yourself and others can help you regain a sense of control over your health.
Self-advocacy
First, we would like to make a disclaimer that, while self-advocacy is important, you did not choose the cards you were dealt. Ultimately, the responsibility of advocating should not fall completely on individuals with chronic conditions. That is why TSF continuously fights for increased awareness with activities like TS Awareness Month in February. We hope you join us in the fun!
Health advocacy can help you develop a healthy relationship with yourself. It is critical to learn to trust yourself as the expert on your body and condition. Recognizing that you are the authority
on yourself and that your experiences and concerns are valid is the first step toward fighting for yourself in different situations.
Putting Words to How You Feel
One of the major benefits of support groups is that you learn other people’s perspectives on common challenges you might face. You will find that the people in these groups are amazing and do a really good job explaining what they are going through, which then gives the other members of the group the language to do the same.
One example of something that can be learned in a support group is the concept of spoon theory, which can help doctors and family members understand the concept of fatigue. The concept of a “spoonie” allows others to see how much energy someone with chronic fatigue has throughout the day, in comparison to others who do not. For example, you may only have 20 spoonfuls of energy. For someone with a chronic condition, taking a shower could use up 10 of those spoons, whereas the average person may only use two.
When an individual with a chronic condition shares this information, it helps for family members to be understanding and put less pressure on them. Having that understanding can be helpful for people with chronic conditions who don’t feel normal for not wanting to socialize or go out with their friends, for example. Teaching family members and doctors how you are feeling is a great way to advocate for yourself when you have chronic illness.
Making Connections
Connecting with other individuals in the TS community can allow you to form deep connections, develop empathy for others, and use this connection to come together to create change in the quality of healthcare for those with TS. The more people you meet and form deep connections with in the TS community, the more opportunities you will have to come together and get things done. Consider joining TSF’s private, online group Star Sisters, which meets monthly and provides a place to connect and share experiences.
10 Tips for Navigating the Transition to Adult Care
Now let’s talk about the transition to adult care, which can be a challenging time. If you are used to having your parents make all your appointments, manage your medications, communicate with your doctors, etc., it can be overwhelming to have to do all these things on your own. But it can also be very liberating to gain the independence to manage your own healthcare. You are your best advocate!
- Early adulthood can be stressful. Don’t be afraid to also advocate for your mental health! A phrase that could be helpful for medical appointments is, “Physically I feel well today, but mentally I would say that I am not doing too well at this time.”
- Keep a journal of your symptoms, medications, and appointments on your phone. Include contact information for all your specialists and how often you need to follow up with them.
- Look on your medical provider’s or hospital’s website to read about specialists you are thinking of transitioning to and what they have published. Reading about doctors and what they are interested in can help you determine if they may be a good fit for you and your personality.
- Take advantage of your local diagnostic labs for bloodwork. If your doctor wants you to have a blood test done at a location far away from you or at a time that is inconvenient, see if there may be able to order the blood test from a lab that may be more convenient for you.
- “What would you do if you were me?” is a great question to ask your doctor when they are giving you treatment options. Doctors also love it when patients ask this question because it shows that you trust them. When you have an appointment, come with a list of questions you want to ask. This can help you remember important information, especially in stressful situations (we all experience “white-coat syndrome” at times).
- Access your medical provider’s patient portal ASAP. This allows you to see your test results, visit notes, and schedule and view upcoming appointments. Patient portals make these things so much more convenient. The more familiar you are with them, the better.
- Ask about cancellation/waitlists. Medical providers, especially specialists, are so backed up these days, and it can be hard to get timely appointments. Getting on a waitlist may help you get in sooner.
- Document the timing and severity of any symptoms you’re having. If they do not resolve within a reasonable amount of time, or if something changes, always reach out to your medical provider. Also, make sure to keep appointments for regular follow-ups and testing.
- Beware of “Dr. Google!” Researching your condition and what may be causing your symptoms or lab results can be helpful, but it can also lead you down a rabbit hole of stress and worry. Allotting yourself a specific amount of time for research can help. And remember that the Internet has lots of misinformation. Always follow up with your medical provider for medical advice!
- Find a support group, like TSF’s Star Sisters! There is no better way to navigate TS than learning from fellow butterflies who understand what you’re going through.
Join Us for TS Awareness Month!
February is TS Awareness Month, and TSF has tons of activities and challenges planned. Join us to spread TS awareness and improve the lives of everyone in the TS community! TSF’s awareness page has everything you need to participate!
Written by Caroline Walsh, TSF volunteer blog writer, and edited by Susan Herman, TSF Blog Coordinator. Designed by Jasmine Persaud, TSF volunteer blog designer.
© Turner Syndrome Foundation, 2023
I was fortunate to have my parents with me at 16 at time of diagnosis to help teach me to advocate for myself. I do not know what I do if I was alone any 16 or younger as teens are aloud now and got a diagnosis of ts and had to navigate it all myself. There was no tsf at time either.in 1988.