Hypermobility Hope is now on Twitter! Follow my tweets as I write about what it is really like to be living with HMS - the daily obstacles faced, the stress of not knowing what to expect from your body, and the hope of knowing that Hypermobility is what makes us strong enough to tackle any of the hurtles thrown our way.
While there is much academic research about Hypermobility out there, there is a shocking lack of studies on how HMS affects patients' quality of life and interefers with thier daily lives. In the hopes of helping to somewhat fill this whole, I will be reporting as much as I can as honestly as I can about the physical and emotional burdens imposed by HMS.
Please encourage others with HMS or who think they might have the disorder to join the discussion! Together we can bring eachother hope and solutions!
Love and Hope,
Chelsea
www.twitter.com/HMShopenow
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ReplyDeletewww.DMHolmesLaw.com
ReplyDeleteI do not know how to send you a email but I found your article in the Fay Observer. I was told at the age of 9 I had hyper mobile joints.
ReplyDeleteHi Chelsea,
ReplyDeleteCheck out the Ehlers-Danlos National Foundation (www.ednf.org). Here in the US, HMS is recognized as Ehlers-Danlos Syndrome, Hypermobility Type. Because it is a "syndrome" and not a disease, there is a lot of variability in how each person manifests and experiences EDS/HMS, but there are some core features each type has in common.
As a member of the EDNF, you receive the monthly newsletter, called the HINGE, and the quarterly Loose Connections. Both have tons of information about EDS as well as personal stories, outreach projects, and research articles.
Consider ordering a brochure from the EDNF called the Medical Resource Guide (MRG) to bring to your doctor. It's very informative - written by doctors for doctors.
Hang in there!
~e
Thanks, Chelsea. I admit, your situation seems pretty extreme to me, but the more I read about hypermobility, the more I think it may be what's causing my pain, too. I have scoliosis & had surgery for it at age 12; my pain has increased exponentially over the past year & doctors can't seem to figure out what's wrong...
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