EDS Awareness Month
I thought it would be good to share my thoughts, feelings and what I feel about Katie having EDS.
EDS did scare me when I first found out about it and truthfully sometimes it still scares me. This condition and its other conditions are horrible, but everyone that has EDS are truly inspirational especially Katie. The sort of things people with EDS go through day to day are really hard.
As a partner of someone that has this condition I want awareness to spread so that medical professionals have a better understanding of EDS and can diagnose it properly so it’s not undiagnosed or misdiagnosed. I also want the journey to diagnosis to become quicker with medical professionals learning about EDS and not assuming it's something else. It can be so difficult not knowing what's wrong for years it puts so much strain on families and the individuals with the condition. That is why EDS Awareness Month is so important in helping people with the condition, making medical professionals more aware of how they can diagnose EDS, supporting the families, helping with valuable research into EDS and showing people that individuals with EDS are amazing.
Before I met Katie I’d not really heard of EDS and the other issues that come with it. To be truthfully honest it did scare me at first but when Katie started talking to me about EDS I soon understood what she has to go through on a daily basis. It did get a bit upsetting learning about each part of EDS.
Katie has to cope with so many things including dislocations, regular fainting episodes, seizures, constant pain and anaphylaxis. I do worry about her most days but she always reassures me. She just gets on with it, never gives up and she has to fight every struggle to the fullest. She’s so amazing I admire her strength, kindness, mindset and bravery. Even on her worst days she always puts me first, that shows how strong she is with everything going on. I’d never change who she is (as she's amazing) but sometimes I wish I could just take EDS away from her.
Sam
xx