We all live life with mysterious circumstances... why am I this or that... The chief mystery in my daughter's life has found a name - Turner syndrome.
I'm the mother of a daughter, Noel Chandler, who turns 50 this year. As a child she was shorter than her classmates. My mother was 4' 11", so what's the big deal there? The women in my family had irregular periods, so I didn’t think much about it when Noel experienced that.
She had frequent ear infections and is the only one of my three children to have her tonsils out. Her brother had asthma, so I just figured they each had their individual problems.
When we moved to Florida, her ear infections kept happening and I noticed that she didn't heal from skin wounds the same as her brothers. She was active, a strong swimmer, and took part in the Pop Warner cheerleading squad. She kept up with her brothers in the pool. Her academic record was good. As the result of an injury at age 16, an x-ray revealed that her calcium was low. Her pediatrician strongly advised us to increase her intake. I wondered how that was possible when she drank a lot of milk and loved cheese.
At age 26 she went for a pap smear. The gynecologist noticed some abnormalities and requested more blood tests. I sat in the office with Noel as the doctor reported she was in early menopause. It appeared to be a hormone imbalance. It was a crushing blow. For me it meant I would never experience the joy of watching my daughter become a mother. For Noel it meant that her dream of having children was gone.
She threw herself into the life of a successful businesswoman. That same gynecologist did a chromosome work up. It revealed an abnormality, but he didn't know exactly what it was. He put it on a website for other doctors to look at. A professor of pediatrics in Philadelphia (Dr. Judith C. Ross, M.D) contacted the local gynecologist. He contacted Noel. Dr. Ross flew Noel and I to the Thomas Jefferson University Medical College for testing. She was the first person to explain to Noel the variations of Turner syndrome.
The symptoms kept coming - heart failure, diabetes, thyroid problems. I'm 23 years older than my daughter. I've sat in waiting rooms in hospitals on so many occasions where the patients in the beds were my age, and the people in the waiting rooms were Noel's age. It seemed so baffling and cruel until one Spring day when Noel and I drove over near Tampa for a fundraiser to educate people about Turner syndrome.
For the first time, we were in the company of kids with TS from all walks of life. I was overwhelmed with relief and gratitude that Noel had others she could talk to about this mystery. And I was angry at myself because I didn't know. So many of the mothers of children Noel's age did know from an early age. We had a cathartic lunch and ride home.
There were tears, mostly of joy. At last, there were so many beautiful young people, who had each other. But there are still so many people in the world who do not know, who may feel prejudiced towards kids with TS, because they may look different. In a perfect world, that wouldn't happen, but it does. Keep telling people about this condition, please. I'm so grateful to know because it dissolves the heavy cloud of unknowing.