Tuesday, April 14, 2009

Welcome to Hypermobility Hope!

Hi everyone and welcome to Hypermobility Hope!
The purpose of this site to to raise awareness about Hypermobility Syndrome, and to give those who suffer from HMS, or know someone who has HMS, or just think they might have HMS, the information they need to make sure they receive proper care. As a HMS patient myself, I know how frustrating it is to find doctors who will listen to you, who understand how difficult and destructive HMS can be, and who genunuinly respect the implications and complications HMS can have on daily life.
I have tried to create the kind of site that I wish I had been able to find - a compassionate and welcoming environment where one can easily find explinations, information, advice and comradery. I have done extensive research into HMS, and I have provided links to as much information as I could find. Along with the links to scholarly journals I have provided cheatsheets that will tell you what is important and what you need to know from that particular article. I also have attached a fact sheet and diagnostic question list that will help you learn what you need to know about HMS in the most painless way possible. I also hope to upload video interviews with various doctors and other HMS patients.
In addition to general HMS information, I will be sharing my own personal journey with HMS in the hopes that others out there with HMS will be able to relate to my pain, anger, and lonliness, and will be able to glean some hope knowing that they are not alone in this fight.
The medical community has ignored Hypermobility Syndrome since its appearence in medical journals in 1967, and most doctors view HMS more as a curiosity than a serious medical condition. It is my mission to make them see that HMS is a real condition with disasterously negative affects on patients, and that it is time to do something about it!
Please feel free to post comments or suggestions, it is up to us to raise awareness, our fate is in our own hands.
Remember, Awareness = Power + Hope!
Always,
Chelsea

3 comments:

  1. Thank you so much for creating this, its so hard to find a website about this condition that is so informative!

    My 4yr old daughter has just been diagnosed with a fairly serious level of this condition and finding information to tell her daycare carers and our family members is so hard to find.

    I was wondering if you have developed any kind of quick facts sheet for carers? Something that can be handed to teachers etc that explains the basics of the condition the child has and issues that might arise? For example, 'child should be asked to change sitting position if found kneeling', 'do *this* when child complains of leg or joint pain' basic day to day stuff like that.. I would love to hear of anything you might have created and stumbled across - I've turned into a thesaurus trying to find words to search in google lol but no luck as yet..

    Thank you again!
    Kerena

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  2. Hi,
    I stumbled upon your blog trying to find more information about HMS. I have recently been re-diagnosed with Joint Hypermobility but havn't been told very much about it or how it can/will affect me in the future. I'm struggling to find information distinguishing between people who are just hypermobile and people who find this a real health problem.
    I'm looking forward to reading your personal account of HMS and thankyou in advance for sharing the information you've found.
    Cheers!
    Kelly

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