Ehlers Danlos Syndrome is not a joke

  • by: Beth Oliver
  • target: The public/the media/healthcare professionals

Hi all

This petition was originally set up to get an offensive and upsetting comment removed from a Maxim article on the best chronic diseases to have, which portrayed Ehlers Danlos Syndrome (EDS) in a positive light. Thanks to everyone's complaints Maxim has removed this information and will now be working with The Center for Ehlers Danlos Syndrome Alliance to raise awareness.

Therefore I have changed this petition slightly; all previous comments and signatures still count towards the new title.

So if you are new to the page, this is to tell the media and general public that EDS is not a joke condition and is in fact a serious health problem. It is caused by malformed collagen in the connective tissues of the body. Symptoms include; chronic pain, joint dislocations, problems with internal organs such as the heart, blood pressure issues and issues in pregnancy. A quick Google search will give you a full list. Unfortunately EDS is not very well known and often when it does come into the public view it is not taken seriously, as shown in the original Maxim article.

More awareness needs to be raised, in the public and in the medical profession. Very few doctors know about it to a sufficient depth and getting a diagnosis can take many years. (It took over 10 years for me to get a diagnosis, from my parents first commenting to a doctor about how flexible I was. I was repeatly told by doctors that I was overly sensitive to a bit of muscle ache and on some occasions was accused of making it up. It was only until I dislocated my knee and tore my leg muscles that I was referred to a rheumatologist who was able to diagnose me). However diagnosis of this condition does not necessarily mean the adequate amount of support can be provided, for example it is common for patients to only see physios post injury, which does not help manage the overall condition and means physio becomes negatively linked with injury in a sufferers mind.

So please, sign this petition and leave a comment sharing your or someone you know's experience with EDS and the lack of support surrounding it. Hopefully this will at least educate a few people about this condition and possibly inform the media to educate people correctly about EDS. It might even encourage healthcare professionals to learn more about EDS.

Thank you for reading :)

We the undersigned want to raise awareness about EDS, in the public, media and healthcare profession. It is a awful condition that affects many lives.
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