My name is Ciara and I’m from Newcastle, born in 2000 which makes me 18 years old. I’m the only one in my family with glycogen storage disease 1a, which was diagnosed when I was six months old.
I hated any form of exercise and had a diet high in carbohydrates and sugary food. This went on for a very long time and my stomach became very enlarged, and I was short of stature with short, thin wispy hair.
Warned about my diet
One day at the hospital I had a meeting with my doctors and some from Manchester. They talked a lot medically and I was very confused. Finally they told me I needed to start eating properly otherwise it could end up with me needing a liver transplant.
Ciara (front) ice skating at age 15
Ciara at time of writing, age 18
Meeting another family
My mum and I had no idea what to do, but the dietitian invited us to meet a family whose son has GSD1a, just like me. I didn’t know anyone else with GSD1a, so It was great to meet them and for the first time I didn’t feel so alone. We talked for a while and it helped my mum feel able to ask for advice. Before we left they said, “You should come to the AGSD-UK Conference, it’s a great way to meet people and you can meet Dr David Weinstein from the US, and everyone else”.
The conference and Dr Weinstein
In 2016 the AGSD conference was in Bristol – a long way from Newcastle, not only for me bringing all my equipment, overnight feed, etc., but also for my mum driving all that way. We debated for a while whether or not to go, in the end we thought “What do we have to lose?”.
The conference at first seemed very technical and confusing. But my mum and I approached Dr Weinstein for help, expecting him to just give a few guidelines, but instead he sat with us for over an hour, helping us with a cornflour regime that fitted around me.
A big change in approach to food
I started the new food plan in October 2016. It was scary as I changed my diet and came off my overnight feeds (which had been like a safety blanket for me). I started having low-carbohydrate food and cut out sugary foods. Out went dairy, fruit and sweets. Within a year I was used to the new food and cornflour. I have changed a lot, from my physical appearance to the way I deal emotionally with the condition. My hair became thicker, I have grown (and am still growing) and my stomach has reduced considerably in size.
A return to say thank you
A year later I returned to the conference wanting to thank Dr Weinstein and everyone else, including the friends I had made along the way. I try to attend the conference every year, seeking new information. I would encourage more people to go because it is really helpful. Since the conference my confidence has been boosted and given me the courage to get a job and to go to university where I am studying Food and Nutrition.
To finish I want to say thank you to all the friends I’ve made, Dr Weinstein and his colleagues, as well as the AGSD-UK. I am forever grateful.
