My rare disease

Koolen-de Vries Syndrome - Becky


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In this episode, Becky tells us about the rare condition that she has along with 2 of her children, Koolen-de Vries Syndrome which was only founded in 2006! Becky opens up about how the condition can present in different people and how it can affect people day-to-day. We then talk about mental health and statistics published by Rare Disease UK. Becky tells us about her own mental health experiences and how for her, being different is empowering.
Becky has created her own KDVS community which you can find via: Thriving Rare on Instagram and Koolen.mama also on Instagram.
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My rare diseaseBy Katy Baker

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