Family Doctors in Mclean, VA

Dr. Tamison Jewett at Brenner Children's (Wake Forrest Baptist Health) in Winston-Salem, NC She's a geneticist and yes, even though she's at a children's hospital you can see her! I love her. Make the appointment and don't be upset if it takes six months to get in. All geneticist have long waits.

Actually, you're also close to Johns Hopkins and Baltimore, where two of the world's experts are, Clair Francomano and Howard Levy. You may be able to find someone through these resources. EDNF Physicians Directory http://www.ednf.org/index.php?option=com_sobi2&sobi2Task=search&Itemid=99999999 The next two don't have contact information, but if you see someone you'd like to contact, Google them: EDNF Professional Advisory Network http://www.ednf.org/index.php?option=com_content&task=view&id=21&Itemid=213 Speakers for 2011 EDNF National Conference http://www.ednf.org/index.php?option=com_content&task=view&id=2068&Itemid=88889230 and for the 2012 http://bit.ly/H1 sbYR

I've been to Dr. Clair Francomano and Dr. Tamison Jewett and by far Dr. Jewett is best all around!! You can p.m. me and I'll be glad to tell you why.

Dr. Jewett is also on the advisory board (if that matters). Good luck:-)

Gravity affects hypermobile spines and the way skull sits on a hypermobile's spine. Show him the comparisons between supine and vertical in this, they've convinced several doctors there's a difference, including at least one referral in Canada to the US: Syndrome of occipitoatlantoaxial hypermobility, cranial settling, and Chiari malformation Type I in patients with hereditary disorders of connective tissue http://prettyill.com/resources/view/dr._francomanos_cci_article http://prettyill.com/downloads/Dr._Francomanos_article_CCI.pdf

You may be able to find someone close through these resources. EDNF Physicians Directory http://www.ednf.org/index.php?option=com_sobi2&sobi2Task=search&Itemid=99999999 The next two don't have contact information, but if you see someone you'd like to contact, Google them: EDNF Professional Advisory Network http://www.ednf.org/index.php?option=com_content&task=view&id=21&Itemid=213 Speakers for 2011 EDNF National Conference http://www.ednf.org/index.php?option=com_content&task=view&id=2068&Itemid=88889230 and for the 2012 conference http://www.ednf.org/index.php?option=com_content&task=view&id=2195&Itemid=88889273 You might also ask at the EDNF Inspire Online Community, http://www.inspire.com/groups/ehlers-danlos-national-foundation/. There are not many specialists, although there are far more than there were 20 years ago. For regular treatment, you will be best served by finding a doctor near you whom you can visit often as needed, and who can take charge in case of an emergency. The best you can do for yourself is learn all you can manage about EDS, and find doctors and nurses who are smart enough to realize they don't know anything, humble enough to learn from you, and compassionate enough that they don't burn out. There aren't as many as there should be, but every one that learns from you will be able to help not only yourself but any other EDSers they have as patients. [Mark]

Suggesting you download both the EDS2010 and the Pain MRGs available on the ednf.org website; make a copy for any physician you see. Validation seems sadly only to come from the written word! SueRN

You may be able to find someone through these resources. EDNF Physicians Directory http://www.ednf.org/index.php?option=com_sobi2&sobi2Task=search&Itemid=99999999 The next two don't have contact information, but if you see someone you'd like to contact, Google them: EDNF Professional Advisory Network http://www.ednf.org/index.php?option=com_content&task=view&id=21&Itemid=213 Speakers for 2011 EDNF National Conference http://www.ednf.org/index.php?option=com_content&task=view&id=2068&Itemid=88889230 You might also ask at the EDNF Inspire Online Community, http://www.inspire.com/groups/ehlers-danlos-national-foundation/. Doctor struggles are a huge component of EDS, there are no easy answers. There are few specialists. The best you can do for yourself is learn all you can manage about EDS, and find doctors and nurses who are smart enough to realize they don't know anything, humble enough to learn from you, and compassionate enough that they don't burn out. EDS is difficult to treat because there is no cure, and many doctors went into medicine to cure people; they don't always realize that simply helping us by managing symptoms makes a huge difference in our lives, even if we're never cured. There aren't as many as there should be, but every one that learns from you will be able to help not only yourself but any other EDSers they have as patients. [Mark]

Dr. Levy at John HOPKINS IS A GREAT PLACE TO START

Thank you so much, Mark. That is good advice! I was able to set up the PT for January and made an appointment with my doctor for next Monday. At least it's a start. I will make that list, too. Thanks again. It's so good to have a place to go for help and people who know EDS and care. Thanks for that, too.