welcome to oneFAPvoice
- a positively charged Familial Adenomatous Polyposis community.- join today!
- login
Shrinking the silence
I’ve been thinking about starting a blog for a while, but have always been shy to put myself out there online. Since finding out about all these fun rare diseases, I’ve had a lot of thoughts – good, bad, random – go through my head and I always find that writing it down really helps.
I didn’t realise it would be so hard to come up with a name for the blog, I work in marketing so also had to be careful not to go too cheesy. I realise that what I chose, ‘shrinking the silence’ does probably need a bit of explaining. Many rare diseases are not widely talked about or known about, yet there are lots of people who live with them every day. I’ve found that at times because you don’t hear a lot, it can be isolating and there is a lot of silence on information and finding common experiences. So by sharing more, I hope to shrink the silence and have more stories shared and found online….shrinking is also in relation to my hope for my desmoid tumour to continue to shrink!
expertly curated content related to this topic
-
Desmoid Tumor of Mesentery in Familial Adenomatous Polyposis: A Case ReportOur case concerns a 52-year-old male wit...
-
A Comparison of Adverse Events and Functional Outcomes After Restorative Proctocolectomy for Familial Adenomatous Po...PURPOSE : Restorative proctocolectomy is...
-
“Teenage cancer trust has shown me I was never alone” Phoebe, South TynesideI had been feeling ill for as long as I ...
-
Bonnies Diary Feb 08https://jtvcancersupport.com/embed/30453...
-
The Impact of Rare Disease on Family CaregiversIt always hurts when a loved one gets si...
-
Breakfast Recipes for Reducing Colon Cancer RiskWondering how to rustle up nutritious br...
-
Caregiver stress: Don’t forget self-careMaybe you take care of your spouse, who'...