Doing 'my bit' to raise awareness about Ehlers-Danlos Syndrome is really important to me. With awareness comes understanding and that is something that we really need more of in both a public and medical setting. Ehlers-Danlos Syndrome is not just bendy joints. It afftects multiple organ systems and results in life long management of multiple symptoms, whether that be gastrointestinal, urological, neurological, orthopaedic, cardiology, endocrinology, dermatology...The list is endless and it is all areas that our faulty collagen affects. There are forms of EDS that can be life threatening and many that are life limiting. Having EDS is not only a battle physically, but practically also. With a condition that is so unknown, fighting for care is extremely difficult and finding specialists that don's have months and months of waiting lists is practically impossible. This means we are often left to see doctors with an inadequate level of understanding and as a result receive poor treatment. By raising awareness and speaking out EDS will become known and interest in it's causes will become a focus for medics as a result. Please help me reach out and make the voice of EDS patients world wide heard!
Today I posted this on my Facebook page 'Building a dream- Chloe's Way Forward'. It is a small piece on how different my life is now to a few years ago, yet still very much a purposeful existence and one I will use to the maximum of its capabilities. Here it is:
I am so proud of both the Chloe's in these pictures.
The first Chloe took pride in her appearance after a long struggle with depression and the motivation to move from her bed. She was focused and blessed with wonderful opportunities and dreamt of travelling, working hard and really making a difference in the world. That Chloe didn't hold back her feelings, she spoke her mind and made sure she advocated for herself so her views were heard. She volunteered, helped others and was finding her feet in incredible ways.
The second Chloe is me today, a Chloe that has realised her life has taken a different path to the one she desired, but isn't bitter or angry at the battles she faces. This Chloe manages to find positives in difficult circumstances. She shows relentless strength when enduring medical procedures and difficult symptoms. This Chloe dedicates a majority of her time to supporting others. Even with all she faces herself, she finds the time and strength to try and make a positive difference for others. This Chloe is still strong, just in different ways. This Chloe is fighter, a warrior, she doesn't give up but instead drags herself over the hurdles with all her might.
It is okay to compliment yourself, speak positively of your amazing qualities and see from an outsiders perspective how special you are. It should not be classed as vein or self centred. It should be classed as loving yourself in wonderful ways.
Throughout May I will continue to try and raise awareness for EDS with my pledge to talk to someone about EDS every single day. Just by talking to someone about EDS plants the seed in their brain, that memory can then be triggered in everyday life and EDS will pop into people minds. Stand up for EDS and make a difference- Take your pledge today!