Monday, January 18, 2010

Good News for HMS Research!

The University of Michigan's Genetics department has recently teamed up with the Ehlers-Danlos National Foundation to create a 'comprehensive Hypermobility database.' To that affect, the University of Michigan is conducting a survey of Hypermobile patients now through March which focuses on 'their full range of symptoms, treatment efficacies, and experiences with the healthcare community.' This information is absolutely vital, as much of the scepticsm of the healthcare community towards HMS stems from a lack of sufficient data about how HMS impacts a patient's daily quality of life. The information collected in this survey will help to serve future generations of HMS patients, so please take the time to help out.

Anyone with EDS type III/HEDS/HMS/BJHS is welcome to take the survey (you do NOT have to be a member of the EDNF), and please encourage your hypermobile friends and familymembers to participate as well. Under the 'diagnosis' column please select 'other' and then enter 'Hypermobility Hope' if this website has helped you find answers to your diagnostic questions, it will be much appreciated!

The survey can be found here and takes about 45 mintues: http://www.ednf.org/index.php?option=com_content&task=view&id=1862&Itemid=88889153

38 comments:

  1. Wow, thanks Chelsea! I'll check it out.
    Hope all is well with you.
    ~elise

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  2. We grew up in Fayetteville so your article at EDNF caught my eye. My son was at first diagnosed the JHMS.He went on to be diagnosed with Classical Ehlers Danlos Syndrome. This condition is extremely painful and changes your life. We, as you, had to go to many specialist and were called "crazy" by the look in their eyes but we continued until we got the diagnose. Would love to chat. I can be reached at User958871@aol.com
    Brenda

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  3. Thank you for your site!! I am EDS III, and a patient of Dr. Tinkle (that is how I first found you). Will be combing over your site, as my diagnosis is just about 2 weeks old. Finally found an answer, but now trying to educate myself! Thank you for your dedication!

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  4. Hey...my name is Katie and I am 22 years old and in the same boat as you. I have EDS type 3/JHS. My Mom actually found your blog. It is always good to know someone else who understands what life is like with this problem. I understand what it is like to try to balance college when inside all you want to do is yell...and how it consumes your thoughts and actions daily. If you ever want to talk, my email is katie.monroe@student.indwes.edu Thanks for posting!

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