Friday, September 4, 2009

Dr. Brad Tinkle

I had the distinct pleasure of having Dr. Brad Tinkle comment on my recent article out in the Fayetteville Observer. Brad Tinkle is arguably the most influential advocate for Hypermobility Syndrome in the US today. His book, Issues and Management of Joint Hypermobility: A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome, is extremely helpful - it details a wide range of symptoms related to the disorder, and personally helped me make sense of my medical history - and is availible at Amazon.com. Please read his post, below.

Brad T Tinkle, MD PhD - Chelsea's story is a sad one indeed and unfortunately repeated everywhere too many times. We need to advise healthcare workers and families that joint hypermobility is not a "gift" to be exploited especially in young athletes, and we had better work towards making a long term difference in their lives by re-teaching those to use their joints within normal limits.
The Ehlers-Danlos National Foundation recognizes the hypermobility syndrome as the same as the hypermobile type of Ehlers-Danlos syndrome and would welcome those seeking support or information.

2 comments:

  1. Yes, I had been doing "party tricks" with my hypermobility for years. It didn't hurt then and I had no expectation that it would. In retrospect, I should never have popped my hip out of place for entertainment of friends.

    Probably the late diagnosis along with misusing my joints added to the unrelenting pain I now have.

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  2. I am one of the "older" folks that got diagnosed. Kind of a backward progression where it was after my 4th total joint replacement that I suddenly had weird pain in my hands, wrists, elbows, shoulders, back, legs, feet ~ I was like WHAT? I had the knee and hip replacements to gain function and vitality (from bad arthritis oa) and now what's going on? Well a year of tests later and one smart cookie for a rheumatologist ~ suggested BHJS. I went to a university medical center and they confirmed it although they like to distinguish EDS-HM from BJHS at this time. So my Brighton criteria is a full on 'yes' with both of the major criteria and four of the minor criteria ~ the Beighton score is only a 4 with hyperextension in elbows too but not over 10 degrees ~ and it's impossible to know about the knees. Shoulders and back are definitely hypermobile per physical therapy exam.

    Now it's been asked I get collagen studies but the lab says I don't need them and the university says I do......by skin biopsy. I have no reason to suspect any other kind of EDS than the hypermobile variety. A first cousin died of OI ~ and his sib is a musculoskeletal enigma...no one seems to know why all these ruptured tendons, bruised bones, broken pelvis, ribs etc with no mechanism of injury. So maybe that's why they suggest the biopsy. Anyway I do want you to know how happy I am for you doing your blog to help people. I am very happy to have you in the good hands of Dr. Brad Tinkle. That's just so amazing to me. If I could hug him I would for sure for writing his book for the world to read. I might go to the conference in Baltimore in July I think just to hear him speak ~ I'm that impressed.

    The thing I did want to say though was that toward the end of last year I was asking the EDNF about hypermobility syndrome and EDS-HM and a nurse wrote me back telling me they were absolutely not the same thing at all.....I have the actual email likely in my saved file. So just an FYI that not all their staff seems to be so up to date ~ even though I shared with her Dr. Tinkles writing from the book. I hope you are doing well and thanks again.

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