EDS Awareness Month May 2018

What is EDS Awareness Month?

Every year in May, people with EDS all over the world raise awareness of the condition by taking part in various events to spread the message and help raise money. Some will do weird and wonderful things depending what they are able to while others may dress up in zebra clothing or paint their face with zebra stripes. The reason for this is to make people understand that having EDS is more than just "being bendy" which a lot of people seem to think when you say what you have and also to make the medical professionals realise how complex the condition is.

How I have been raising Awareness

I always try to come up with something different each year, last year I was in hospital during this time and met a fellow patient with EDS so we got together and decorated the sick bowls with zebra stickers making them into hats and made awareness posters, we also dressed in zebra clothing. Even though I was in hospital I still wanted to be able to do something and it certainly got people asking what it was all about.

This year I am in respite at a local nursing home where there is another lady who also has EDS, before she met me she never knew anyone with EDS and had given up trying to, zebra's united! I asked her whether she would like to do something to raise awareness and she came up with a coffee morning with zebra striped cakes and balloons, which I thought was a great idea, the staff in the home were very supportive with this and allowed everyone to wear black-and-white for the day if they paid £1 donation, a reporter from the local online news came to interview us about our condition and also had a chat to our parents as well. Read full article here
There were plenty of lovely cakes to enjoy some with zebra stripes and leaflets were available for people to take away. The home presented a cheque for £200 which was very kind and generous of them and donations were collected during the event of over £300 so it was a very successful morning and everyone had a lovely time.

Delicious cakes at the coffee morning

presented with a cheque from the home manager

Following the success of the coffee morning it was decided they would have another coffee morning/afternoon just for people with EDS to come along and chat with each other in a safe and supportive environment. One of the staff also managed to get the head of the Ehlers Danlos Society Lara Bloom to come along and chat to everyone on the day. This will be a fantastic opportunity to ask any questions that are troubling you and find out the latest information on the condition from the expert, I am really excited about this as I really admire what she does despite living with EDS herself. I will do another post following this event.

The nursing home has also agreed that a support group can be set up regularly for people with EDS, something that is lacking in our area, to come along and chat with others who know what they are going through and myself and the other lady will be hosting this. Something I have never done before but am excited about. I can't thank the home enough for what they have done to help raise awareness of this condition and following the coffee morning a number of people who read the article have come forward to say they have the condition and are interested in coming along to the event which will be in June.  This is why raising awareness is so important as there could be others suffering in silence thinking they are the only ones with this condition but thanks to our coffee morning now realise there are others locally like them and will hopefully come along on the day. #StandUp4EDS