The restrictions that FCS– especially with the diabetes which was diagnosed in 2007 – put on what’s possible for me to eat make it almost impossible to find something I can eat spontaneously. Eating out becomes a tiresome process of ensuring that whoever is catering will provide me with something suitable.  Often this can mean something very basic and not particularly appealing which is relatively expensive.  This all makes eating out a stressful and often not particularly pleasant experience.

If I’ve not been able to organise something in advance and there's nothing suitable then I'll go hungry. Not great if you have diabetes. It is difficult to walk into a café or a restaurant, or a local shop and find something suitable, tasty and filling.

I carry food with me everywhere I go and try to make sure I’ve eaten at home so I don’t have to worry about eating out. If I find a restaurant where the is something I can eat without going through my dietary requirements - a few sushi toppings for instance -  I tend to stick with what I know as I find it the least stressful strategy. Looking at the menu is a search for something suitable rather than deciding what I want to chose.

FCS and diabetes together mean that the range of food that I can eat is ridiculously limited. I feel excluded from any conversation about food unless I want to do the big explanation About FCS, which usually I don’t. It’s surprising how many conversations about food happen in everyday life. At least in mine they do!

I have three children. I wasn’t initially aware that I shouldn’t breast feed as my milk is not nutritionally complete. I found it quite challenging when I was told this after my first baby failed to put on weight.  My pregnancies got progressively more difficult having developed gestational diabetes in the sixth month with my second child and having diabetes from the outset with my third. This meant insulin dependence and eating as close to zero fat that I could manage. I lost lots of weight, became exhausted, and almost inevitably, developed post-natal depression.

My children are all teenagers now, and carriers of the condition. It's unknown whether their carrier status will affect their health in the longer terms, but we have been warned that they may have a slightly higher risk of developing diabetes and my daughters may find there are issues should they chose to have children.

Lack of understanding and awareness of this condition has increased the burden it has placed on my life. Founding LPDL Alliance, now called Action FCS, was driven by my desire to make the lives of others with FCS far less isolated and dominated by ill health than mine used to be.

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