Reportage and Documentary 2019
A ZEBRA WARRIOR, LIVING WITH EHLERS DANLOS SYNDROME
The project is about disability and social issues duo having a chronic disease
I met Angela at the editorial committee of VED Magazine, where we are both editors.
She is a very smart and bright woman who loves to enjoy her life, no matter what, she is struggling to live a normal life with a rare condition. She lives with the Ehlers Danlos Syndrome Hypermobile type (h-EDS).
The Ehlers Danlos Syndrome is a rare and chronic condition which is as also called an invisible disease, because if you don't have a problem to walk ( without using a wheelchair or crutches) or some prosthesis, from the outside you look just like a normal person.
You can't see the pain in their entire body or that they struggle with chronic fatigue and other immune and neurological diseases such as comorbidity. She got the diagnosis six years ago, before that, She had almost fifty after years when she was struggling herself due to a lot of pain and symptoms where no one could find the cause, until she went to a geneticist.
A year ago, she found a good rehabilitation doctor who has provided her the right management and aids. She needs to go to physiotherapy, at least once a week to be able to manage her pain and condition. Angela studied as a translator and interpreter in the English language.
She still works part time as an administrative assistant and she is also writing articles about the Ehlers Danlos Syndrome for VED Magazine.
She has a very positive attitude about her life and also takes care of her mental wellbeing, so in that way she can remain being positive and in balance and that helps a lot when you are living with a chronic condition.
With this portrait she wants to raise more awareness about for the Ehlers Danlos Syndrome and what EDS impact has in someone's daily life and what can the people around you do to make your life easier.”
Thanks to the fact that we have the same syndrome but two different types of it, we have worked together and inspired each other to give the right impact to her story. We both believe that we do have EDS, but EDS does not have us. There is plenty in life to laugh about and enjoy!
Of course, it's a rough path but with the right management we can still enjoy our passions and life.
I also write a poem for every project to explain the concept of the story. The poem about Angela entitled: A Zebra Warrior .