This post is part of the Turner Syndrome Foundation’s (TSF) monthly blog post series My Story, which highlights the varied experiences of individuals with Turner Syndrome (TS) and their families. Below is an account by Toyin, mother of Gbemisola, a 15-year-old Nigerian girl who was diagnosed with TS when she was 12. While the condition is a big part of her daughter’s life, Toyin has taught her not to be defined by Turner Syndrome.
As always, each person’s journey with TS is different, and their medical needs and treatments vary. This is just one account. Please consult with your physicians and TSF resources to help determine what is best for you or your child.
“…she copes by repeating our mantra: ‘I must not allow TS to define me.’”Toyin, mother of Gbemisola
My daughter Gbemisola’s TS journey started in September 2016, when she started Junior Secondary School (JSS1), the Nigerian equivalent to 7th grade in the U.S. She was the smallest in her class, a fact that did not cause any grave concern because she moved to the next class with her former classmates from elementary school. However, with new intakes from other schools, bullying started, and she started asking me (most of the time in tears), “Mummy, why am I so short?” I never thought anything of her height; I simply assumed that her development was delayed because she had low immunity like me.
For the first 12 years of her life, my daughter was regularly loaded with anti-malarial drugs. We live in Africa, and the general treatment protocol is to first eliminate malaria. Later, if there is no let up, other possible viral infections are treated. When I look at her, I feel sorry that we did not know what was wrong at the time but were merely loading her with drugs she did not need.
In her first term in junior school, Gbemisola was always reluctant to go to class on her own. I found out later that she was scared of the taunts by her schoolmates. This made me decide to do something about her height. Therefore, on January 20, 2017 we went to a doctor’s appointment to find out why she was not growing at the same pace as her peers.
After the Diagnosis
To say I was devastated when I was told Gbemisola had TS would be an understatement. My life turned upside down. My first reaction as a journalist was to research the condition, and wow! I came up with tons of negative information and confusing medical jargon. I had no peace until I spoke to a pediatric endocrinologist, who explained to us what it all meant. She simplified what TS was so that my 12-year-old could easily grasp it.
The doctor assured us that Gbemisola could live as normal a life as possible, with the right support. Apart from specialists, we also found support in the TSF and the different TS groups on Facebook. The personal experiences shared on these platforms are indeed invaluable.
The doctors carried out preliminary tests, including X-rays of her palms and wrists to determine bone age, thyroid function test, fasting plasma glucose, ear evaluation, etc. She had the whole works. Gbemisola’s height was a mere 124 cm (4’1″), and she weighed only 26 kg (57 lbs.) at 13 years old. The average height for a 13-year-old female is 156.7 cm (5’2″), while the average weight is 45.8 kg (101 lbs.).
The doctors eventually placed Gbemisola on human growth hormones (HGH) and estrogen to help her growth and development of her secondary sex organs. The first two years of her diagnosis and subsequent treatment were quite stressful. She had nightly injections of the HGH, and her body was trying to adjust to the drug. She was also coming to terms with the possibility of not growing beyond a certain height.
One major challenge during that period was how to pay for the drugs. The doctors insisted that we must have enough funds for the first year, so that the treatment would not be stopped halfway. However, I am happy that we were able to do the HGH. Now my daughter is a happier and more confident young woman. She pursues her dreams and interacts with her peers without any inhibitions. Yes, occasionally she still hopes her height could increase. But she copes by repeating our mantra: “I must not allow TS to define me.” This has helped her immensely. Gbemisola spent the recent COVID-19 lockdown pursuing her dream of writing. She has written three different novels, which, for a 15-year-old, is no small achievement.
TS has meant a re-ordering of priorities for me as a mother. Gbemisola’s survival and happiness has taken center stage in my home. I had many sleepless nights wondering what went wrong, what was going wrong, and what could still go wrong. But I have come out a stronger person. For instance, we needed about 7 million Nigerian naira (about $18,165) for her treatment. I didn’t know where the money was going to come from; I had never done crowdfunding before, which was the main option, but I did it. Initially, I worried about what family and friends would say, but I had to choose between my daughter’s health and emotional stability and my self-pride. I chose the former.
Looking Towards the Future
Given the health facilities in Africa, it is a wonder that Gbemisola is alive today, especially since we didn’t have a clue as to the enormity of her health challenges. When I look back, I wonder how we made it this far. But here we are, three and a half years later. We take each day as it comes and learn how to cope with new developments in her health. We are doing whatever we have to do to resolve each issue and looking forward to a very bright future. My daughter is not defined by Turner Syndrome.
Written by Toyin, mother of a girl with TS. Edited by Susan Herman, TSF volunteer blog post editor and translator.
Visit TSF’s blog for additional MyStory posts and other testimonials, educational information, and resources.