Butterfly Stories from people with Turner syndrome
Nadine Van Jaarsveld
My story starts on June 5, 1993. I was born to two wonderful parents; I had an incredible and fulfilling childhood. The only thing that was a little different was the fact that I was shorter than all of my friends. Initially, that didn’t bother me in the least. I embraced my height and was a happy little girl.
Everything changed when I entered high school. This was the age when most girls started to develop and blossom, but I seemed to have stayed behind. I couldn’t relate to my group of friends; I went through a stage were I did feel like an 'outsider' or 'late bloomer.' Around my 16th birthday, my parents decided to take me to a gynecologist, Dr. Watson, who confirmed a diagnosis of Turner syndrome with multiple blood tests.
Turner syndrome! I had never heard of it.
What was this Turner syndrome? And…why me?
I was confused and scared. I had no idea what Turner syndrome was, so my parents and I did our research, and after weeks of reading I had a better understanding of what TS was and what caused it. One thing that interested me was the fact that TS was genetic—this meant you couldn’t make a diagnosis just by looking at the girl; it was a process. With time, my attitude changed and I accepted my diagnosis and I was happy with who I was.
My turning point was in my third year at varsity when I did a course on gender. I started to connect the dots between the feminine identity and Turner syndrome but I also had a ton of questions that I felt needed to be answered.
The purpose of this story is to make an important statement: do not judge a book by its cover and never let anyone define your limits or who you are! I am living with Turner syndrome. I was on treatment for a whole year, but I went to varsity and completed my degree. As I write this, I am enrolled in a master’s program in sociology. The focus of my master’s degree? Turner syndrome!
Never let anyone make you feel as if you are worthless or different. Instead, we should embrace and support each other for who we are. I might have Turner syndrome, but the help of family and friends and a whole lot of determination has made me who I am today.
I am a proud butterfly and want to make a difference for those living with TS.
I am currently living in South Africa and have started a Facebook and WhatsApp group and already have 9 ladies who have been diagnosed. The problem I find here in South Africa is that there is not nearly enough awareness about TS.
When I was born, my parents knew I was going to have Turner syndrome, due to testing. I was born prematurely and only weighed 5 lbs. 5 1/2 oz. At the age of three, I had very bad ear infections, to the point that they were bleeding. I also had very high fevers and had to be hospitalized. By the age of five, I was almost deaf and needed tubes in my ears to save my hearing. To this day, I still have scar tissue. When I was two or three years old, I had very high blood pressure and due to that I would have seizures. No doctors would listen to my mom; they didn't believe her until one day I had a seizure in the doctor’s office and was rushed to the hospital. Growing into my teens, I found it weird that all the girls were talking about their monthly periods and I couldn't relate to anyone. I felt alone and different. It got harder when I had to skip school every 3-6 months due to a mixture of heart doctors and endos. I was always being asked where I was and why I keep missing school, but I never told anyone. I tried looking for other girls like myself but with no luck. Feeling like an outcast for nineteen years is not fun, and when I started to realize that I can’t have kids, I needed someone but no one understood. When I was about 22, I asked my doctor for one last attempt to find others who would understand what I'm going through. At first, my doctor couldn't find anything, but when I was leaving the office, my doctor stopped me and handed me brochures about TSSUS. When I called TSSUS, I was shocked at how many women understood me. It was amazing; I finally felt like I belonged. Today I'm 27, and I no longer get ear infections, have normal blood pressure, and don't get sick like I used to. My advice to any TS women/girls out there reading this is remember you are worth it. Never give up and keep pushing forward. If you just found out that you can’t have children, seek help from me or other TS women, because we have all had moments of crying and sleepless nights over not being able to get pregnant. If you would like to talk, feel free to contact me. And remember: things always get better.
Mother of a Butterfly
We are still new to everything, but learning more everyday. Just to give you a little about life before her diagnosis: she was born with a fold in the top of her left ear, and her 4th toe on both feet was smaller then the others. But she was still perfect and adorable. During the first year or so of her life, she had eight ear infections within 10 months. She wasn't growing as fast as she should and doctors were thinking she wasn’t eating enough. They had me change her diet to lots of butter and noodles, etc. It didn't help. We were sent to neurologists & gastrologists. We had kidney x-rays, bone x-rays, etc. She had three sets of tubes in her ears that always came out within a year. It was to the point she was petrified of doctors. I said enough is enough. No more tests. She’s healthy, smart, and beautiful. Just tiny! At her 7 year old check up, the pediatrician convinced me to go see one more doctor: an endocrine specialist at Penn State Hershey. The specialist knew almost immediately. He gave me two options, either Turner Syndrome or a growth on her pituitary gland. I was not ready to hear that. I was not expecting anything, just another doctor’s appointment. My husband was so upset that he hadn’t gone with me, since we didn’t expect this kind of news. The news broke me, especially when I came home and started reading about TS. She had extensive blood work done to confirm TS. We went for a second opinion at CHOP and learned they have a team of specialists who are very familiar with this and we fell in love with them. Everyone was there for her and us. We did more testing and saw a cardiologist who told us that she has a bicuspid aortic valve. With this, we learned she would never be able to carry a child. As a mother, this breaks my heart, especially seeing her carry baby dolls around and knowing how nurturing she is. Knowing this, I started looking at different things for her in the future. My husband and I have decided that I will have my eggs frozen for her in the next few months, so she will have the option to use them with a surrogate when that time comes. If she doesn't, that is fine with me. She is unaware of the ways TS will affect her later in life, and for now, we want to keep it that way. She started the growth hormone shots a week before Thanksgiving. A week after that, she started giving herself the shots. Her follow-up appointment was today at CHOP and she grew about 1-1/2” in that short of amount of time. It’s a start, and our motto is “One day at a time!”
My name is Jacquelyn. I am 35 years old and work as an administrative assistant. This is my story. I have known that I have Turner syndrome since I was diagnosed at the age of five back in 1987. My parents fought with my pediatrician to get me diagnosed because the doctor kept saying I was just a late bloomer and they shouldn’t worry, especially since my aunts and grandmothers were on the short side. My mom took me to a well child check and brought my younger sister into the office with me. When my doctor saw we were the same height, that changed their tune. I was sent to Lucille Packard Children’s Hospital at Stanford University for a karyotype. A few weeks later we had our answer. I was diagnosed with Mosaic Turner syndrome. When I was in first grade, I was teased by a few boys a grade above me. After a month of coming home crying from school, I went to my teacher and told her what was going on. That experience started my desire to spread the word about Turner syndrome. From then on, I spoke to my class at the beginning of the school year to prevent teasing. In fifth grade, I did a “Discovery Fair” project on TS and won first place. At age thirteen, I was lucky enough to be selected to attend the Turner Syndrome Camp hosted by Children’s Hospital of Los Angeles. I spent a week in the foothills of Colorado with other girls my age who were experiencing the same issues I was. Taking growth hormone treatment, having to go to the doctors, getting overlooked by those who didn’t know about Turner syndrome, dealing with interpersonal relationships, and more. As I grew older and did more, (playing sports, school, etc.) I let my TSSUS membership lapse and hadn’t really kept up until October 2015 when I started a new job in Sacramento, CA. While there I met another woman with TS who had never met someone else with TS. I had kept in touch with the local TS Support Group and talked her into joining me at the next information day/meeting. To this day, I believe I was meant to get that job so I could help my friend meet other people who have and were experiencing the same things she was and to help her understand that she was NOT alone.
Hello, my name is Mikaela. I'm 19 and am a high school graduate. I was diagnosed with Turner syndrome when I was about 5 or 6. I was little, so it did not seem like a big deal—I was just a kid. I was just like every other kid: happy and perfectly healthy. But my parents started noticing that I was not growing as fast as the other kids height-wise. It didn't really seem like a big deal to me until I started getting older, and I noticed that my friends were getting taller than me. It was a little weird when I hung out with my friends and they looked like giants compared to me. I have not had any other health complications besides being short for my age, and I have now learned that my short stature doesn't matter because I am just like everyone else. I can do what everybody else does—I'm just shorter, that's all. To this day, I am still pretty short. I am about 4 ft. 3 in. tall, and from what I know that is where I am going to stay, but I have learned to accept my short stature. With all that said, now that I am older and know more about Turner’s I want to inform other people about it, and hopefully one day be a role model in some way for others with Turner’s
Hi, my name is Kahla. I’m 15 years old, and here is my story. I was diagnosed at birth with Mosaic Turner syndrome. When I was little, they had to check my heart and kidneys every 3-4 months to make sure I didn't have a problem with them. I have to see my endocrinologist every four months, and took growth hormone from 11 or 12 years old to 14 years old. I had to take estrogen or progesterone; I can’t remember which. I currently take birth control to regulate my period and probably will have to for the rest of my life.
Anya Herrington (Mother of a Butterfly)
We were blessed with a 7 lb. 9 oz. baby girl on October 12, 2005! She was diagnosed with TS at birth. She had coarc repair at 13 days old and a double ballooning at 9 months old. She has had 9 sets of ear tubes, sinus surgery and tons of others. We are so happy, because she is now 11 years old and very active in school activities! She has trouble with some of her math schoolwork, but overall, she’s an honor roll student! She is such a fighter. I was so upset that God gave "my baby" this disease that will curse her for life... was I wrong! God gave me the greatest blessing ever. She is so loving, caring, mothering to her younger sister, so helpful and is my number one sidekick. She never meets a stranger and she loves her church—she makes sure we go to church in Sundays! To anyone who finds out their daughter has TS: please, just take a deep breath and say, “Thank you, God, for allowing me to have this beautiful blessing in my life.” I would not ever want to imagine my life without her in it.
Kelly Campbell (Mother of a Butterfly)
My story began when I was 3 months pregnant. Due to my age, my doctor wanted to do an amniocentesis. The fluid came back positive for Turner syndrome. I'd never heard of it. At first I was scared. They told me she could have either a mild or full-blown form. I had seen pictures, which terrified me. I had so many doctors’ appointments, I felt like I was living at the hospital. It was every 2 weeks, but as I came closer to my due date, it became every week. They scheduled me for a C-section on February 9, 2010. They asked me if I was ready for what might happen, because some Turner syndrome babies have to be taken straight to the neonatal units, and some are born looking deformed. It didn't matter; I was ready. I prayed and God blessed me with one of the most beautiful babies I've ever seen. The nurse was so kind to me and said, “Mrs. Campbell, she's gorgeous. Head full of hair and screaming at the top of her lungs.” I'm truly blessed to have this child in my life. She has brought me so much joy. She's having some learning issues and making friends. She tells me all the time, “Mommy, you’re my best friend.” And she's mine. She'll be 8 on February 10, and has no major health issues.
I am 40 years old. I was diagnosed at age 5. At age 6, I got involved with the study at NIH as one of the original 40 members. I was involved in the study from age 6-14. It helped me a lot to understand myself and what I was going through. It was very insightful and I met a lot of great people along the way. I encourage other girls to get involved in the study and hopefully have the same experience I did.
Hi! My story is still being written, literally and figuratively. Really! I have begun writing about my life with TS. Needs a lot of work, though!I am so glad to be able to share with you just a little bit about myself. I was diagnosed before birth and had to have open heart surgery at age three. While on the operating table, I had a near-death experience where I saw myself on the table and I was floating above it. I could see out of the room into the hall and hear people talking. Remembering this experience and focusing on what it means to me has shaped my life in many ways. I struggled with esteem issues and shyness growing up. I still do not like crowds!! I have had a time with doctors understanding what I want and why- in regards to hormone therapy, bone density scanning, etc. So frustrating! Now I am writing and subbing in primary grade classrooms. I taught preschool for ten years and now want to make writing my way to express myself and support myself. I have self-published books of poetry, am coauthor in several books, and have made peace of mind and self acceptance my priority. I love to travel with my husband, to write and cook. I have learned to accept all of myself and embrace my journey and it has not been easy! It is my hope that girls with TS learn to embrace their gifts and share their heart and their talents with others. That's my story, so far!
Hi, my name is Diana. I’m from México, I’m 25 years old, and I was diagnosed with Turner syndrome when I was sixteen years old. I underwent hormonal therapy treatment, and it helped my female development so much. I feel well, but I also have been diagnosed with thyroid problems. Sometimes, I feel very tired, along with the other typical symptoms.
I was diagnosed with Turner syndrome when I was born. In my life, I have had to deal with so much. In middle school and high school, it was hard for me socially because I felt like an outsider. I am now a sophomore Education major at Tarleton State University and I am in Phi Mu Fraternity. I joined Phi Mu because I knew the girls would love me even though I have Turner syndrome. I also joined because Phi Mu's philanthropic organization is Children's Miracle Network Hospital. We also work with Cook's Children's Hospital in Fort Worth, Texas. I have a long history with Cook’s Children’s, since I went there for my appointments for TS. I join Phi Mu so I could give back to Cook's for all they have done for me. Last fall, I got the opportunity to share my story of my connection with Turner Syndrome and Cook's Children's Hospital to the potential new members of Phi Mu on philanthropy night, during our formal recruitment. Even though I have Turner syndrome, I don't let it get it me down. I embrace it, and I talk about it with people to inspire them to keep going, never give up, and show that it is okay to be unique and love who you are.
Brianna Elibo- Mendez
I was diagnosed with TS when I was 10 years old and starting the 6th grade. I had gone to the endocrinologist, because I was short for my age. The doctor told my mom I should have a sonogram done. They found that my ovaries we not developed, and I had them removed. I have been on hormone treatment since the 6th grade and I'm in 8th grade now. The doctors said that they didn’t notice I have TS sooner because I have a mild case. I am also a dancer. It has been tough for me to dance like I used to before my surgery. But I fight through all the negativity because I know I am a beautiful butterfly, and so of all of you! Thanks for reading my story