This May I am participating in the inaugural Dazzle Walk to raise money for The Ehlers-Danlos Support UK. EDS is a condition whereby the collagen in the body is faulty. Collagen is found in all body tissues such as the eyes, the skin, the heart and all organs and the joints.

Hi, my name is Viv and I am 13 years old. I do not have my diagnosis yet as doctors have always refused to refer me to a specialist. Ehlers Danlos is a genetic condition (my mum has it) and I have suffered  most symptoms since birth with little treatment and help. Zebra is the symbol for EDS because when you hear its hooves, people think it must be a horse and not a Zebra; it is the same for EDS, the symptoms are associated to other problems and no one thinks it could be EDS. 

EDS affects my daily life as it is a chronic illness. I have to manage chronic pain where my joints, my muscles and bones hurt all over the body. I also have chronic fatigue which EDS sufferers have because the body is exhausted dealing with pain. Fatigue is more than tiredness, it’s like a bad flu plus more symptoms and for the rest of my life. However no one talks about it and there is little care available on the NHS for us. EDS also affects my eyes: I have holes in the retina. Also, my muscles are very weak and I cannot manage to do sport at school, however I do physio exercises. It can be hard at school as a result. 

Due to the symptoms and lack of care and understanding, people with EDS are called Warriors or Zebra Strong because we need a strong spirit to live our lives. Please follow our story on Instagram and Facebook, look for  eds_Zebrattitude.

Thankfully, the Ehlers-Danlos Support UK have helped us to get a referral sent to GOSH.  Please be generous to help more children! 😊

Thank you,

Viv