Fundraiser of the Month -October 2017 – Kate Owen

 

Myself, my partner Craig and my beloved Dog ‘Sam Dog’ are running the Glasgow half Marathon on the 1st of October to raise awareness & money Ehlers-Donlas Support UK.

A very good friend of mine Friday Smith suffers with EDS, here is her story……….

As a child I was always unusually bendy. I started having mild back pains around 14 years of age, but just thought it was normal.When I was around 16 I started training for the Navy. I was running everyday and I thought I had sustained an injury in my left hip and had more back pain.I rested for several days, and started running again. The “injury” flared straight back up again.  After a year of on and off again pain, I started seeing doctors. I got medically declined from the Navy due to my Hip and Back and was under investigation from the doctors. I spent the next 4 years in and out of hospitals and
seeing various doctors and undergoing many investigations. When I was 20 I was
finally diagnosed with Ehlers Danlos Syndrome (EDS). It took so long to get a diagnoses as the condition rare and difficult to diagnose. I was one of the lucky ones. Other I know with the condition have spent 10 years or more trying to get diagnosed. EDS is a genetic Connective tissue disorder with different types. I suffer from EDS type 3, which is the hyper-mobility aspect of it. I suffer from dislocations in several joints, Including Hips, shoulders, fingers and toes. I spend everyday in pain, even on “good” days. On “bad” days the pain can leave me bedridden. EDS affects every part of my life, I struggle to do even simple things without sever pain or dislocations.  I struggle to sleep due to the pain, even washing my haircan be almost impossible. I cannot carry even the lightest of weights without my fingers dislocating and dropping it, meaning I cannot cook or make hot drinks for myself. I get very severe fatigue making it difficult to communicate well, or remember details given to me.  On top of that, I take medications which can also make me drowsy and forgetful. I am very lucky I have a supportive friends and family. They understand when I have to cancel plans at the last minuet due to having a “flare up” or a “dislocation” or when I am in the room with them, but my brain is not.  They pick me up when I fall, (which is often!) and support me during hospital and doctors appointments, often ferrying me to one or the other. But there is no cure for EDS.  My condition will only get worse – With the added side effect of making me almost 100% certain to get arthritis as I age.  There is no magic pill that can be taken, only pain medication to manage the side affects.  The EDS charity are looking at not only cures but better ways of managing the condition.They also offer support to people who have struggled to get their diagnoses, or are struggling to get the medical support they need. They are also an ear to us all when we need it, thats why when Kate send she would run the marathon in my name for them, I was truly touched.They need the funding more than ever to help to continue to provide this amazing service and support. What Kate is doing will help change peoples lives and I am eternally grateful for this.

 

Thank you to everyone who took part and those who donated, we raised an incredible £1096.25

More News Articles

Charity news, patient stories, events, reearch & Ehlers-Danlos in the press