Changing the Narrative in Person-Centred Health and Social Care I wear many, many hats in my day to day life. I work full time as well as writing, advocating, raising awareness for rare genetic conditions, with a side of inclusion activism thrown in for good measure. I’m also a bit of a social media addict. […]
Author Archives: Ellie Challis
20
Dec
Dec
It is said over 3.5million people in the UK have over 7,000 rare diseases, 85% do not have a treatment for their condition. The Cambridge Rare Disease Network works to build a community to address the unmet needs of these people living with rare conditions. This month saw their Annual Rare Fest, which is a […]
21
Sep
Sep
If I think back to my diagnosis 5 years ago when I was told I have a significant risk of breast, thyroid, uterus, kidney and skin cancer, to now when I live a ‘normal’, happy, fulfilled life where I embrace my Cowden’s diagnosis with a positive, lucky outlook, it makes me realise life really can […]
16
Aug
Aug
Sarah shares her experience When and how did you first get diagnosed? I was first diagnosed because of my niece. When she was born, they noticed she had a big head so they did some tests, which led to my sister being told that she had cowden syndrome. Both my sister and her boyfriend were tested […]
24
May
May
Ross is in his 20’s and shares his experience. When and how did you first get diagnosed? Signs where there when I was in Primary School at the age of about 6 or 7, and they found 2 lumps and unusual symptoms. This was around 15 years ago and I was young at the time, but from […]
29
Apr
Apr
Derek is in his 50’s and shares his experience 1. When and how did you get diagnosed? In late summer 2006 I saw an ENT Consultant at my local hospital (Queen Alexandra in Cosham) over Ménière’s attacks. He sent me for an MRI scan and from the results I was admitted to Southampton General on […]
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