On the 5th of June I will be taking to the waters of Brixham Swimming Pool to challenge myself to swim a whole mile in order to raise money and awareness for Ehlers-Danlos Syndrome.
My name is Ruby and I am a teenager from Brixham living with a disability. This disability is called Ehlers-Danlos Syndrome (III) and is a connective tissue disorder resulting in a collagen deficiency. This leads to the ligaments and soft tissues including the ones surrounding my joints are very lax and unstable. Symptoms I experience include chronic pain in my knees, hips and back, subluxations of the kneecaps, fatigue and easy bruising and Postural Orthostatic Tachycardia Syndrome which causes dizziness and blackouts. All of these symptoms are invisible and so it is incredibly difficult for others to understand.
Ehlers-Danlos Syndrome is believed to be genetic and therefore hereditary. Due to the lack of funding and research in this area of medicine, there is no scientific test that can be carried out to confirm the diagnosis of EDS and due to the lack of knowledge of the disease, many people can go undiagnosed and untreated for years.
As there is no cure for Ehlers-Danlos syndrome, management for me has included taking painkillers every day for the last five years, trying to carry out some form of exercise even when in pain or exhausted and pacing myself with daily activities to ensure I can carry out normal tasks. I use a wheelchair to get around if I am going out for the day and there are some days where I cannot get out of bed at all.
It is the lack of understanding, knowledge and research that has driven me to fundraise for Ehlers-Danlos Support UK. By pushing my body and myself to its limits, I will be challenging myself just as much as the people who are struggling through daily life with a disease that has no cure, is completely invisible and may even not have been diagnosed yet. This is why it is so important to me to raise as much money and awareness as I possibly can over the next four weeks.
I have already reached my initial target of £500 and so only hope to keep that number rising. If you can spare even the smallest amount it would mean the absolute world to me.
Donate what you can, share what you can, and let’s get people talking about the invisible illness which is Ehlers-Danlos Syndrome!
Please go to www.justgiving.com/ruby-jones to donate now!