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Tuesday, 10 July 2012

A few weeks ago a competition took place for people to enter their designs of a horse to help raise awareness for a certain concept they believe in and the design of the winning horse will be on public display in Bristol for a few months to raise awareness. 

Once the entries were in, all people had to do was to vote on Facebook by liking the picture of the horse that they wanted to vote for.

The chosen design was ‘Linky’  the horse, designed and painted to help raise awareness about Ehlers Danlos Syndrome! 

Thanks to all those of you that voted for the design helping to make it become one of the most popular entries. Linky the Painted Pony will be unveiled in Cabot Circus, Bristol City Centre in mid July and will be on display to the public until September. Linky will help to raise awareness of EDS to thousands of shoppers over the summer.

Friday, 6 July 2012

Update: From now on there shall be new posts up every Tuesday and Friday.

30 things you probably didn't know about me.. Copy and paste and tell others more about yourself. Taken from www.invisibleillnessweek.com

1. The illness I live with is: Ehlers Danlos Syndrome Type 3.
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 1998
4. The biggest adjustment I’ve had to make is: Giving up sport.
5. Most people assume: I'm as well as they are.
6. The hardest part about mornings are: Fatigue and joint pain.
7. My favorite medical TV show is: Casualty.
8. A gadget I couldn’t live without is: my iPad - easily transportable and comfortable to use.  9. The hardest part about nights are: discomfort.
10. Each day I take __ pills & vitamins. (No comments, please) it varies depending on my condition that day.
11. Regarding alternative treatments I: attended a tai chi class.
12. If I had to choose between an invisible illness or visible I would choose: Personally, invisible.
13. Regarding working and career: I won't let my condition stop me.
14. People would be surprised to know: I am in daily and constant pain/discomfort.
15. The hardest thing to accept about my new reality has been: how much the fitness of my body has deteriorated.
16. Something I never thought I could do with my illness that I did was: manage and control it.
17. The commercials about my illness: don't exist.
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up: football, tennis, hockey.
 20. A new hobby I have taken up since my diagnosis is: writing.
 21. If I could have one day of feeling normal again I would: there is no such thing as normal... But probably runny laying a football match.
22. My illness has taught me: not to naively judge others.  
23. Want to know a secret? One thing people say that gets under my skin is: when people say 'but you look fine'. 
24. But I love it when people: ask out of interest about my condition.
25. My favorite motto, scripture, quote that gets me through tough times is: "Life can only be understood backwards, but must be lived forwards. " - Soren Kierkegaard
26. When someone is diagnosed I’d like to tell them: They're not alone.
27. Something that has surprised me about living with an illness is: My understanding and tolerance of other illnesses.
28. The nicest thing someone did for me when I wasn’t feeling well was: just be there for me.
29. I’m involved with Invisible Illness Week because: it raises awareness about all kinds of invisible illnesses, helping people to get the support and advice they need.
30. The fact that you read this list makes me feel: really appreciative. Thanks, but yet more can be done to help raise awareness, so get in touch.

Wednesday, 4 July 2012

About Invisible Illness Week 2012

September 10-16, 2012 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 10-14 online for free with speakers.

Below are some videos from the Invisible Illness week campaign

Stay tuned for many more posts about Invisible Illness Week 2012! #iiwk12

New post up later today: #iiwk12 - My 30 things meme

Monday, 2 July 2012

Sorry for the absence of posts recently... but more updates and posts are to follow soon!

Please watch the video below showing Mimi Newman telling her story about life with EDS and how she is trying to raise awareness about the condition.

Follow us on twitter: @hideandseekid