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December 25, 2012 at 11:00 pm in reply to: Bauerfeind Orthotics Company is coming to an EDS Houston Support Group Meeting #3256
This thread is either primarily inactive or is over 90 days old and will be closed. Please feel free to reopen the discussion by clicking on “New Topic” in the upper right hand corner of this page. Thanks!
This thread is either primarily inactive or is over 90 days old and will be closed. Please feel free to reopen the discussion by clicking on “New Topic” in the upper right hand corner of this page. Thanks!December 25, 2012 at 10:56 pm in reply to: Nailing down my diagnoses – finally making progress after 13 long years! #3254
This thread is either primarily inactive or is over 90 days old and will be closed. Please feel free to reopen the discussion by clicking on “New Topic” in the upper right hand corner of this page. Thanks!December 25, 2012 at 10:50 pm in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #3252December 25, 2012 at 10:43 pm in reply to: I see most have POTS in this forum-Does autonomic neuropathy qualify? #3249December 25, 2012 at 10:22 pm in reply to: I can breathe deeply when the tightness between my shoulder blades is relieved!!! #3243
If flying to see a Doctor, I would choose Baltimore also. Unless the recommended Doctor is well skilled in connective tissue and other skin related conditions and going there is far more workable than Baltimore because you’d have things like support, a free place to stay and transportation. I’d honestly only pick someone other than Dr Francomano because financially it was impossible to see her. There is however an extremely long wait to get in. I’d jump at the chance to take my Daughter for a consult with her if I could.
Yes, peg teeth are EDS related. I somehow had missed this:
I just stumbled on another summary produced by the BBC (major UK TV station) that mentions peg teeth as being a feature of EDS:
Hello, my friends! Can I please introduce you to Sarah, our new wonderful helper? She’ll respond to this intro with her user name, etc. Please feel free to contact her if there is anything you need, if you have problems with the site, if you need your windows cleaned — WAIT! She’s waving at me. No, apparently you’re on your own with the windows. But most everything else, she will be the go-to person while I get the MASSIVE amount of work ready for our trials. Cool? Please say “hi”! 🙂 Diana
Hello! My name is Sarah, and I am Dr Diana’s new assistant. I wanted to formally introduce myself to all of you and to tell you how excited I am to be working alongside such an amazing person whose heart beats to help those like herself who are chronically ill. Let me tell you from this side, I am simply amazed that she has come this far, basically, as a one-woman operation. She would say, however, (and I strongly agree)that she would not be where she is today without her amazing volunteers! And she is so very grateful!!
The thing is, at this stage in the game, we REALLY need more manpower, more people willing and able to help in various capacities, so that we can really push forward more quickly. We understand what it is like to live with chronic illness and know firsthand the importance of taking care of ourselves the best we can. So, understandably, there will be times when volunteers can’t help as much depending on their physical states. And that is perfectly okay. This is all the more reason for us to have as many people on our “helpers” list as possible. That enables some to fill in the gap when others aren’t feeling so strong. So, if you are interested in volunteering, please contact us at firstname.lastname@example.org and complete the volunteer form, as well. We would love to have you on board as part of the team!
On a final note, may I say that you are all heroes in my book, fighting and surviving, though the road traveled is unknown and treacherous most of the time. I have been there myself, and still am to some degree. Living with chronic illness is no easy task, but is definitely one of life’s great teachers! Hang on; there IS hope! Science takes time and money. That’s where donations and fundraising come in, as well. We definitely need to get some help in that area! Dr. Diana and her husband have personally funded the 2 million spent so far. That just doesn’t normally happen in the world of science! That truly shows their level of commitment though, doesn’t it? So, if you can assist with donations and fundraising, that would be so appreciated! The good news is, you have a brilliant doctor who is working fervently toward finding a cure. She will not stop until she sees this through until the end! We WILL get there! And with your help, we’ll get there even sooner! Thank you all for your consideration and your willingness to join the team effort! Take care!
In hope and health,