1. You need people to care. You need people to care about your cause. That is the only way there will be funding for research on a cure and every person with EDS wants a cure. Most of us will have nights where we cry just wishing for a cure but whats the point of that? Is that going to make people care? Probably not in the privacy of our home. People don't fully understand what EDS is like. One day this month I want to do a "Day in the Life of an Ehlers Danlos Syndrome Patient" to show you some idea of what it is like.
2. It would be nice not to have to explain what EDS is every 5 minutes and having to explain it to doctors, nurses and healthcare professionals when you are at the hospital. When your sick you don't like explaining to the doctor what your illness is or having them google it! It doesn't give you a whole lot of confidence.
3. I would like people to realise that cancer isn't the only illness and the worst illness. Now I have had family affected by cancer (my dad died with lung cancer) and it is not a nice thing but when I tell people what I have people have said "At least it isn't cancer" but EDS can still take my life, I still spend plenty of time in the hospital, I don't have treatments like cancer does that can put me in remission if I am realistic I know that I will get sicker as I get older and it can take me young. So if someone tells you they have an illness please what ever you do DON'T say "At least its not cancer"
4. Its more common than you think and an early diagnosis can help. It could be as common as 1 in 5000 people. It doesn't discriminate. You or your child or a friend or family could have it so being aware of EDS and the symptoms helps because you could pick it up in someone and help them to get an earlier diagnosis. Yes not everyone who is hyper mobile has EDS but a lot do! It isn't really "normal" to be hyper mobile.
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