Share your story, connect with others! - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Share your story, connect with others!

tryingmybest_ profile image
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I have posted about this before but my account got deleted I guess so I'm gonna give it another go (thank you so so much to everyone who has helped so far, it means the world):

I am hosting a podcast and creating a corresponding publication, featuring community stories about experiencing chronic illness/disability/mental health issues, anything that may lead you to being more house bound than others. The purpose of this is to reclaim time at home as a celebration of joy and to help build community for those who are experiencing something they feel alone in.

The podcast is designed so you can listen to it and connect with others, without it being a big expenditure to yourself.

I am organising and creating the early episodes. What this means is I need brave members of the community to share their stories so I can get the ball rolling!

The plan is to send you over the questions, you can note down what you’d say, and then we’d do a call where we can go through it. This would then be edited into a short episode. Alternatively, if you don’t want your actual voice being shared, you can send me written out answers to the questions and I will read them out like an audiobook rather than an interview.

For accessibility and also for those involved, I am creating a publication featuring stories and nice snippets. This will then be sent out to those who contributed, as well as possibly being shared with the relevant charities, and other community groups. I understand if you are hard of hearing, having an audio format is not super great so the book is here to combat that.

Examples of some of the questions:

What is your condition?

What are your symptoms?

How has this impacted your life in regards to your mobility and leaving your home?

Who are you most grateful for and why?

What is your favourite object/thing in your home/garden? It can be anything from a pet to the wallpaper to a mug to the birds outside.

Here is a link to send me your email, anonymous to anyone else, as well as letting me know how much you'd like to contribute, even if it's just hearing about when it starts being released:

surveymonkey.co.uk/r/VKXVJCR

Thank you again for all your thoughts so far, it's been absolutely paramount!!!

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