Welcome to the next installment of the Turner Syndrome Foundation’s (TSF’s) “Day in the Life” series! So far, we’ve gotten the opportunity to learn about how Turner Syndrome (TS) affects the daily lives of Grace and Chloe, a young girl and adolescent with TS. In today’s post, let’s learn about a day in the life of a woman with TS, Helen Rhoads, and how her journey with TS has affected her through childhood and into adulthood.
How TS Can Affect Everyday Life
TS is the result of an entirely or partially missing X chromosome and affects 1 in 2,000 live female births. The most common physical effects of TS are short stature; delayed puberty; infertility; and heart defects, such as a bicuspid aortic valve or aortic coarctation. Individuals with TS are also at higher risk for bone fractures, osteoporosis, scoliosis, hearing loss, vision issues, and kidney problems.
As a result of these physical effects, those with TS must visit cardiologists, endocrinologists, ophthalmologists, orthopedists, audiologists, and other specialists throughout their lives. Many children with TS take daily growth hormone therapy (GHT) injections and later estrogen replacement therapy (ERT). ERT may continue into adulthood for women with TS. Early diagnosis, timely medical treatment, and finding a community for support are crucial to a TS patient’s overall health.
I was born and raised in Montgomery, Alabama, but I currently live outside of Atlanta, Georgia. I have a Master’s degree in higher education and currently work as an Academic Advising Coordinator. One of my favorite hobbies right now is genealogy, which is the study of ancestry and the origins of family trees.
I was diagnosed when I was 12 years old. When I kept falling off the bottom of the typical growth chart and never started my period, my pediatrician started thinking something was wrong and had me tested. At that stage in my life, I hadn’t been in the hospital since I was an infant! I was sent to Children’s Hospital in Birmingham, Alabama due to a heart murmur, which I’ve since outgrown.
How TS Impacts My Everyday Life
I think the biggest daily struggle I face has to be all of the medications I need to take! It drives me nuts to have so many prescriptions, but I take them because they keep me alive and healthy. I have two estrogen prescriptions (patch and cream), as well as medications for my high blood pressure, high cholesterol, and high blood sugar (I’m a Type 2 diabetic).
One of the biggest overall challenges I face due to TS is that I CAN’T REACH ANYTHING! So many things are just too high! All kidding aside, short stature is really the main obstacle I consistently deal with. I realize very often that I’m blessed to not have the heart, kidney, or other physical effects that some butterflies have, and I try not to take that for granted.
Overcoming Obstacles and Challenges
In a day in the life of a woman with TS, you learn to be very resourceful and plan ahead–both very important skills to have. Before my first year of teaching, I made sure I had a step stool for my classroom. Now, I have a step ladder in our apartment for reaching the top shelves in our kitchen.
I’ve learned to ask other people for help reaching things. I’m not nearly as afraid anymore to ask someone if they would hand me that item I need from the top shelf. My husband is sweet and will get my clothes out of the washer for me and put them in the dryer. Having the courage to ask for help can be one of the most admirable traits in a person, so never hesitate to seek assistance when necessary!
Turner Syndrome and My Adulthood
My medical treatment has been pretty good as an adult. I have very few TS symptoms that require medical supervision, but my doctors have monitored me and made sure I don’t develop problems. I can definitely feel myself getting older, as I’ve enlisted the help of three specialists over the last year to keep tabs on my health. The doctors I’ve seen have really helped support me in preventing problems, which I think is crucial. Finding doctors who listen to and support you in taking the best care of yourself is so important.
My "Words of Wisdom"
TS is not just an obstacle or barrier. Yes, there are certain struggles that TS butterflies face, but there is no situation we can’t tackle if we have confidence and find our inner strength. Be aware of those obstacles, but don’t let them overwhelm you if you don’t know for certain they’re an issue. And something I’ve heard my dad say that I think every butterfly needs to hear: “You can do more than you think you can!”
Stories such as Helen’s demonstrate how a TS butterfly’s strength and self-worth can allow them to accomplish remarkable things! Sure, she faces challenges in a day in the life of a woman with TS. But Helen has persevered and spread her empowering energy to her coworkers and students throughout her career. To hear the stories of more inspiring women like Helen, make sure to explore some of TSF’s programs, such as the private Star Sisters group and the Awareness Committee, which works to plan awareness initiatives and bring a voice to TS.
Thank you to Helen for sharing her story for our Day in the Life series and for reminding us that we all matter. Realizing we have the strength to overcome challenges is what makes the journey worth taking!
Written by Helen Rhoads and Canon Pham, TSF volunteer blog writers, and edited by Susan Herman, TSF Blog Coordinator. Designed by Jasmine Persaud, TSF volunteer blog designer.
© Turner Syndrome Foundation, 2022