We hope you had a wonderful festive break! The new year is now in full swing so we wanted to start the year by announcing our hopes and dreams for 2023! We took everything on board that was discussed at our last patient day and have a vision for 2023 to help our community even further. […]
Author Archives: Ellie Challis
06
Jan
Jan
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. […]
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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