Those who know me may or may not know that I have Turner Syndrome. While I am open about Turner Syndrome, it isn’t something that comes up all that often. I’ve struggled for years to put into words just what Turner Syndrome has meant in my life. While I certainly wouldn’t be the same person I am today if I did not have Turner Syndrome, it has not defined me. I admit, Turners has made certain things, such as motherhood, more challenging, but for every young girl with TS reading this, I want to make this as clear as possible: Turner Syndrome has yet to stop me from achieving anything. As tomorrow marks the beginning of Turner Syndrome awareness month, I am sharing my story.
My name is Lindsey Russell, and I was diagnosed with Turner Syndrome at 3 years old. At that age, I fell off the growth charts, and I was fortunate enough to have a concerned pediatrician, Dr. Wright, who had previous experience with Turner Syndrome. The fact that I have Turner Syndrome was then confirmed by an endocrinologist at Mott Children’s Hospital at the University of Michigan Medical Center. Even though I attempted to find out if I have classic Turner Syndrome (the entire X chromosome is missing) or mosaic Turner Syndrome (only part of the X chromosome is missing) in my 20s, I never received those copies of my medical records. Throughout my early childhood, I had yearly check-ups in Ann Abor. Even though I didn’t know I have Turner Syndrome until I was 10 years old, I could sense that I was somehow different.
Fortunately, I do not have the more serious heart and kidney issues associated with Turner Syndrome. I do have a large number of moles, short stature, and infertility. I also had issues with reoccurring ear infections as young child, which resulted in several sets of tubes (I couldn’t even tell you how many) and slight hearing loss. In fact, I hated seeing the ENT (ear, nose, and throat) specialist, Dr. Stoddard, because I dreaded getting another set of tubes. For the record, Dr. Stoddard was one of the nicest doctors I ever had, and I feel terrible that I hated him so much as a child. My fear of tubes stemmed from my memory of my last set of tubes at age four (I think). I remember throwing up due to the anesthesia, and I was terrified I was going to have to go through that again. For the record, I have yet to meet a girl or woman with Turner Syndrome who did not have several sets of tubes as a child.
When I was ten years old, everything changed. In the early 1990s, HGH (human growth hormone) came into use for “treatment” of Turner Syndrome. In fact, in later years, I met girls slightly older than me who participated in the clinical trials. At age ten, I started daily injections of HGH. I stayed on those shots until I was 15 years old. In fact, the development of HGH treatment for girls with Turner Syndrome is how I found out I have TS. In order to be considered for HGH treatment, I had to spend a night in the hospital for hourly blood tests. As I was not sick, my parents were put in a position where they had to explain that I have Turner Syndrome. I am deeply grateful to my parents for their honesty and their insistence that I could achieve whatever I desired.
Today, I have mixed feelings about the use of HGH for the treatment of Turner Syndrome. I don’t believe that short stature should be treated as a disease. It is that simple and that complex. I completely understand why my parents decided to put me on HGH. They simply wanted the best for me. What I do not understand is the medical profession’s singular focus on height in girls with Turner Syndrome. During my adolescence, there was little if any discussion of infertility, possible learning issues, or anything else. The focus was almost exclusively on HGH, the timing of puberty and hormone replacement therapy (again, related to height), and, of course, final height. I felt like a freak of nature.
Adolescence and puberty are hard enough; now imagine it planned, measured, and discussed at length. Like any other adolescent girl, I just wanted to fit in. I didn’t, and I never would. At age 14, I had the opportunity to attend a camp exclusively for girls with Turner Syndrome. It changed my life. For the first time in my life, I met other girls with Turner Syndrome. I finally met others who shared similar body and social issues. I had the opportunity to travel halfway across the country on my own. I attended two years, and I credit camp for giving me the confidence to study abroad repeatedly during my years at Michigan State. By having the opportunity to meet others with TS, I realized that I am not a freak, and I am certainly not alone.
Today, after having earned degrees in supply chain management and Spanish from Michigan State University, I am going back to school to teach Spanish and/or social studies at the middle school and/or high school level. Once I am established in my new career, I hope to adopt. Even though the pain of infertility never fully goes away, I do believe that I am meant to adopt. I am looking forward to the next chapter in my life.
Women and girls with Turner Syndrome face a wide variety of physical, emotional, and social challenges. They also happen to be one of the most highly educated and determined group of women and girls I have ever met. Never let a label define you or let anyone underestimate your ability.
This is both informative and poignant. Thanks for sharing your journey.
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