EDS Fact: Number 45


EDS 45

EDS Fact: Number 45

“Issues with my Tissues” on YOUTUBE!


I HAVE EXCITING NEWS GUYS! YOU CAN NOW WATCH “ISSUE WITH MY TISSUES” ON YOUTUBE! Here is a link for the FULL documentary! Please watch and share and lets get EDS on everyone’s lips!!!
Charlie x

Issues with my tissues.



Last night I watched “Issues with my tissues” which is a documentary about a very inspirational woman called Lara Bloom also suffers with Ehlers-Danlos syndrome. It followed Lara as she trained and attempted to walk the London Marathon. It also showed interviews with medical professionals such as Professor Rodney Grahame, families with EDS and individuals with EDS.
I sat down to watch the documentary with my partner and wasn’t really sure what to expect. I find it very hard to explain to people what is wrong with me and Ehlers-Danlos syndrome has such a dramatic impact on my life and the documentary said so many things that I struggle to explain myself. I could relate so much to Lara and the other people with EDS and felt as though I wasn’t alone. It was nice to see health care professionals actually understand EDS and the massive impact it can have.
I got very emotional when watching the documentary as one thing I have always enjoyed doing is walking and running. If I felt sad I would go for a jog. At the weekends I would go for walks in the peak district or for a jog with my partner. One of my greatest accomplishments was completing a 5 mile race when my health was deteriorating. I have always dreamed of running a marathon and always said “I’m going to run a Marathon when I’m better” and it really upsets me that now I realise I probably will never be able to do this. Quite often I would get poorly after a long run and I guess I never really listened to my body up until I couldn’t physically do it any more. Watching the documentary made me realise how dangerous these things could have been to my health and at the time I may have thought I was helping my body when in fact I could have been damaging it, especially with my POTS. I was so inspired by Lara and her strength and determination that it gives me a bit of hope that one day I may be able to get back to my walking etc.
My partner was also touched by the documentary and I think that it helped him understand some of the daily battles that I face. Lara said something that really hit the nail on the head for how I am feeling. She said that sometimes it feels like it would be easier to have bad days and no good days because then people would find it easier to understand and this is exactly how I feel. I often think how are people going to understand my illness and believe my bad days if I have a good day and look completely “normal”. Truth is I really need to make the most of the good days when they do come and not worry about what other people think.
The aim of the documentary is to show why recognition and awareness of EDS is so essential and I feel that it really does. It shows that EDS is more than “just being a bit bendy” as lots of people think. From now on when people say to me “I wish I could help you” I am just going to kindly ask them to watch the documentary or buy the DVD so that it may give them a better understanding of Ehlers-Danlos syndrome.
Thanks you to Lara Bloom and all involved in the making of “Issues with my tissues”. You can buy “Issues with my tissues” on DVD by clicking the following link: http://www.ehlers-danlos.org/online-shop/books/issues-with-my-tissues-dvd-detail
Charlie x

EDS Awareness.



Another EDS awareness picture. Feel free to share. Lets get EDS on everyone’s lips.