- Diagnosis: FAP
- Diagnosed in 2012 when she was 18 with FAP
- 10cm of colon remaining
- Sigmoidoscopy every six months
- Wants to help young people with their conditions
- Interest in IVF for the future
- Uses St Mark’s E-Mix Recipe
- Leads a normal healthy lifestyle
My FAP story starts with my dad, Peter Grainger. I was aware that he had FAP but wasn’t in the know that the condition was hereditary until I was around 18 when my brother and I went to St Marks for testing. There was a 50% chance of us inheriting the disease and I unfortunately picked the short straw!
A week before my 20th birthday I had most of my large colon removed laparoscopically by Mr Fraiz, Consultant Colorectal Surgeon at St Marks who performed one of the first Colectomy which left me with around 10cm of remaining colon.
“Ever since then I have been for a Sigmoidoscopy every year. Since my operation life has gone on as normal, nothing has changed.”
I am involved with the support group as my dad, who started the group, wanted me to continue with his good work and this is something that I have been very proud to take on.
I understand how hard a diagnosis like this can be for young people as it can feel quite isolating, sometimes embarrassing, but it doesn’t have to be! This is why I hope to develop more platforms for young people to express their worries and support them. As a young woman, in considering the future I had many questions regarding fertility, as FAP is a familial condition. This is the sort of information that we can provide.
I haven’t experienced any major changes in day to day living and I believe that turning up regularly for checks is vital to keeping as well informed and up to date as possible. Nothing is ever as bad as it seems, and I hope through Polyposis Support, we can help as many people as possible to give them the support they need so it isn’t as much of a taboo!