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Ehlers-Danlos Foundation of New Zealand
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Your Stories. I read the last newsletter and you were asking for submissions for your next issue if anyone cared to submit something. As a friend of an EDS sufferer I would like people to hear from my point of view what it is like from the outside looking in. My dearest closest friend has Hypermobility EDS. Judy is in pain more than she cares to admit. Her joints just pop out at different times. It could be her neck and if it is, Judy has to support her neck while talking to you. Judy’s hips pop out willy-nilly also as well as daily headaches and general achiness. EDS is a cruel condition which is not recognised like MS or other mobility conditions so therefore there is a lack of understanding from the medical profession and some people in general. I am certainly not and wouldn’t run down others for lacking any knowledge about EDS because it is only because my friend has it that I myself am aware. The message I would like to get out there is simply, tell people. Tell people when you are in pain, how it feels, what would help it etc. I know and have seen first hand the disbelief Judy herself comes up against with others because there is so much “unknown” about the condition. I am still learning also about other types of EDS that other people have to live with. So the more we all speak up the more we will be heard. You won’t be complaining to people you will be explaining to people. Judy’s EDS has made it virtually impossible for her to hang her own washing out, hose the garden, walk with friends, jump in the car and dash out when she feels like it. All these things and more that I take for granted every day. I can only listen to Judy and I prefer for her to tell me when things aren’t good as opposed to her putting on a brave face to save me stressing out. I have (light heartedly) made up my own thoughts on what Judy’s symptoms of EDS are: Super thoughtful Love of animals Perfectionist Too generous Very creative Intelligent Stubbornness KFC addiction Having to make my own coffee Thank you for taking the time to read this. Please pass on all the EDS material you get, newsletters, videos etc. and have family and friends read and pass them on also. MANDY SPENCE This article may not be reproduced in any manner without prior permission of the author. |
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