John F Kennedy celebrated his Birthday on 29 May. You may think a day of celebration in his name would lead us to his time as President of the US. However, it’s what he didn’t say that The Addisons Self Help Group (ADSHG) wants to celebrate for the fourth year in succession.
He suffered from Addison’s Disease and other Autoimmune conditions which he kept a secret. Addison's Disease is a rare condition where the body's adrenal glands can no longer produce the cortisol required to help the body manage stress placed upon it. At worst it can be life-threatening and is notoriously difficult to diagnose and manage. The condition is considered a Rare Disease which means;
‘A rare disease is defined as a condition that affects less than 1 in 2,000 people. It is currently estimated that there are over 7,000 rare diseases, with new conditions continually being identified as research advances’.(https://www.gov.uk/government/publications/uk-rare-diseases-framework/the-uk-rare-diseases-framework)
Now the ADSHG plan to use this day to encourage this year's theme ‘Don’t Wait, Educate’. Through seven themes the aim is to;
Share and educate across all sectors; patients, medical professionals the general public
Fundraise through targeted events whilst encouraging others to be creative and start their own challenges
Continue to promote the #ShareYourKit campaign which looks at ways in which medication can be easily stored and transported. It includes the sharing of photos to give others ideas and options to buy from the shop.
Stand out on social media through clear, bright, accessible branding
Talking about being prepared through #AddisonsQA sessions on Twitter with top medics in the field answering key questions through hour-long sessions
Promoting Research Grants available to medical professionals and trainee doctors
Making their voice stronger by encouraging more to join the charity
For full details of the day visit the dedicated Addison's Disease Event Page. To stay up to date with all things Addison's visit the News Page and read patient stories on the Blog Page. To purchase stickers, holders, leaflets, etc there is a comprehensive shop.
Awareness and understanding are key for successful diagnosis, management, and support.
Addison's Disease - Events Page
Addison's Disease - News Page
Addison’s Disease - Blog Page
Addison's Disease Shop
NHS - Rare Disease Framework
https://www.gov.uk/government/publications/uk-rare-diseases-framework/the-uk-rare-diseases-framework
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