Another Bird takeover here to share a charity with you that is incredibly close to my heart. Jeans for Genes do incredible work which helps support those affected by genetic diseases and their families. Although each genetic disease is rare, together they affect 1 in 25 children born in the UK and together with their complications, are the biggest killer of under 14’s in the country. Jeans for Genes supports smaller, local charities who do wonderful things from providing support, education, care and much more, without which many affected families would have a much poorer quality of life. If you are able please wear your jeans with pride on September 20th and donate as much as you can to Jeans for Genes – even better if you can organise an event in your work or school, it’s a perfect excuse to get your jeans on and maybe even bake a little something?
This charity is particularly special to me because I have a genetic disease. I have Ehlers-Danlos syndrome type III, commonly shortened to EDS or HMS (hypermobility syndrome). This is a genetic syndrome which affects collagen (the most abundant protein in the body). I was diagnosed two years ago when I was 21, after a lifetime of health problems, all of which doctors struggled to diagnose. The diagnosis of Ehlers-Danlos tied all of my symptoms together, and finally made sense. So for me, being diagnosed wasn’t a sad occasion. It was nice to finally put a name to what was wrong and learn how to deal with it. Ehlers-Danlos has no cure – I am lucky because I have a mild form of it, but it’s severe forms can involve organs and blood vessels and can dramatically shorten your lifespan. The symptoms vary wildly and in childhood, for my form, can be as simple as easily broken bones, easy bruising, joint pain, clumsiness – many things which are either seen as normal and brushed off, or, devastatingly for the families involved, can be picked up as child abuse.
I refuse to let my diagnosis define me or my life. Yes, some mornings are difficult – one of my knees may be partially dislocated meaning I can’t walk. Sometimes when I get home in the evenings after a particularly tough day I am so tired and in so much pain Fats has to help me to bed. But day to day, I live a normal life. I limit my painkillers, I work full time, I go to the gym, I go for long walks and (as you may have guessed by now!) I love to cook. This may change as I get older, osteoarthritis is almost certain, and many people with my condition use a wheelchair either part time or permanently but I am doing what I can to put this off. I am having regular physio and doing pilates and similar exercises to build strength in my core muscles so that they are able to do the job that my wobbly ligaments can’t, I eat healthily to keep illness at bay and to help my energy levels.
Not all children born with a genetic disease are as lucky as me to be able to live a “normal” life though – for many they will struggle with movement, communication and may have to have regular medical interventions which are a huge strain on them and their families. By donating whatever you can to Jeans for Genes you could help make a child’s difficult life a bit easier.