Another great post for Ehlers Danlos Awareness month, this time from Hannah at Sunshine and Spoons blog. As a child growing up with aches and pains, dislocations, sprains, dizzy spells, clumsiness, migraines, circulation problems….it really was just how life was as no one even thought to join the dots, let alone consider a syndrome that might be responsible. I never even heard the name “Ehlers Danlos” until my late 30s – although Marfans was mentioned to me aged 20.
I do know about EDS now and have made it my business to as so many with rare illnesses need to. The result has been that I recognise my kids are growing up symptomatic – although getting a diagnosis is proving difficult as referrals are pushed from the desk of one consultant to another – and understanding that not everyone has pain daily, struggles to keep up with hand writing in class, is constantly twisting an ankle or popping a joint. One son is living with severe migraines for which we seem to be in a constant loop of changing medication to bring some control as he is about to sit his A level exams. His long neck gives him daily pain and undoubtedly contributes to his migraines. My daughter, aged 14, has dislocations, daily joint pain, dizzy spells, writing problems…..the eldest, the student engineer aged 21, is hypermobile, has a sternal “deformity”, clumsiness, dizzy spells – sound familiar?? All three, whilst very bright, suffer massive anxiety to such an extent that over recent years we have visited CAMHS, Heads Together, use of anti depressants and mindfulness techniques. I feel a whole post coming on…..being the age they are, mum has not been able to pin them down for a quote as I write this!!
My younger 2 zebras and me!
So without further ado let me introduce some great children who have spoken to Hannah:
“This post may be a little hard for you to read. I know I had tears in my eyes more than once while typing this up.
If you’ve been hanging around Sunshine and Spoons for very long, you know that at least 3 of my 4 kids have Ehlers Danlos Syndrome, which they inherited from me. Davy (3) and Nano (7) don’t really understand it yet, but Katie (9) does. She goes back and forth between being proud of being a zebra to asking why God would make her have EDS and all of the pain that goes along with it.
Kids are supposed to be able to run and play. They shouldn’t have to deal with chronic pain and fatigue. They shouldn’t have to spend their childhoods at doctors’ offices, wearing braces and explaining random bruises.
But, that’s not how things always work. I interviewed 25 kids who have EDS to see what it’s really like to be a child or young person with the disorder. “
For the remainder of the post and the children’s quotes please click on the following link
What It’s Like To be a Kid with Ehlers Danlos Syndrome