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 the majority 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 six months. Since my operation life has gone on as normal, nothing has changed."
I have recently joined the PolyPeople team to help with the rebranding, website and social media channels. Especially as my Dad wanted me to continue with his good work of developing the group to continue to support others affected by Polyposis Syndromes.
"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 for PolyPeople to support them in any way they might need. As a young woman, in considering the future I had many questions regarding fertility, as FAP is a familial condition.
"I'm learning more about the possibilities of IVF, which for me is a very positive prospect for the future."
This year I had started to experience changes to the salt levels in my body. I was constantly thirsty, lethargic, and when I went to the gym my sweat would sting my eyes and skin.
"I was introduced to St. Mark's E-mix Recipe which really has started to make a difference to my energy levels and water intake in a day."
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 PolyPeople we can help as many people as possible to give them the support they need so it isn't as much of a taboo!