General Practitioners in Mclean, VA

The ICA can help. Here's a link to the ICA website page where you can search for doctors in your state. You have to create a login and password and then you can search. When searching I find it best not to put in any specialty; just put in your state. You'll get more results that way. http://www.ichelp.org/HealthcareProviderRegistry

Dr. Danella at Geisinger is a wonderful urologist. i don't know if he deals with IC but i do know he is awesome!

Dr. Whitmore in Philly is awesome. Thats where I go and I live near wilkes barre

Hi Vikki, I Googled "Ehlers Danlos Syndrome Australia" and it gave the top site as EDSAUS. I am guessing that is what you are looking for (http://edsaus.ning.com/). It looks like that site has a chat option so finding a great doctor for diagnosis of yourself and daughter would probably be best found there. Good luck!

I'm not sure if they're still active: Australian EDS Support Group PO Box 106 Marulan NSW 2579 Phone / Fax 0011 61-2-4841 1111 E-mail: prairie@goulburn.net.au or EDSAussie@altavista.net Or http://www.edfnz.org.nz/ New Zealand Ehlers-Danlos Syndrome Support Group Maraetuna Farm Craggy Range Road,R.D.12. Havelock North, Hawkes Bay, New Zealand Phone: 06-874-7799 or 021-2153-471 E-mail: flopsy@ihug.co.nz I really know nothing about doctors Down Under. I can give you some general notes about diagnosis... Diagnosis is done through examination. An EDS exam for diagnosis probably will include testing skin for what it feels like, how much it stretches; the Beighton Score http://www.hypermobility.org/beighton.php for testing hypermobility, taking a look at your medical history to figure out what EDS symptoms you may shown in the past and whether you inherited EDS. It might also include an echocardiogram if heart or vascular issues are suspected, or other tests depending on the symptoms and doctor. There are genetic tests for some of the types that can confirm a diagnosis, but can't be used to rule one out in most cases; if you don't test positive genetically, that doesn't mean you don't have EDS. We simply aren't sure of all the gene mutations yet. The exam for EDS is a good, thorough basic physical examination. Classic type has a test that catches about 50% of cases; Hypermobile type has no test, although there's a possibility at least one of the causes has been identified (Haploinsufficiency of TNXB Is Associated with Hypermobility Type of Ehlers-Danlos Syndrome http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1180584/ this is probably a cause of some forms of Hypermobile type). The test for Vascular type is 95+% accurate now; the rarer forms also have well defined tests. Any doctor, really, can diagnose if they can know enough about how to assess the diagnostic criteria (for more look at http://www.ednf.org/index.php?option=com_content&task=view&id=1352&Itemid=88888970). They're not complicated. However, most people wind up at a geneticist's office because it's hereditary, or at a rheumatologist's office, because it's connective tissue. You will find doctors who don't want to diagnose it because it's not curable. Remind them that even though it has no cure, the symptoms can be treated, and knowing you have a type of EDS gives you and your medical team some idea of where problems might come from and why they're happening; if there ever is a cure, at least you'll all know to use it; and the more of us who are diagnosed, the more likely it is EDS will get the attention we all need and the more likely researchers will work on finding a cure. Even knowing what type you have, your own case of EDS will be your own case; while knowing what might happen is helpful, you'll probably have only a subset of symptoms and not the whole set. Doctor struggles in general are a huge component of living with 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. Every doctor that learns from you will be able to help not only yourself but any other EDSers they have as patients. I wish I could be of more help. I simply don't have anything more to draw on. You might try posting on the EDNF Inspire Online Community at http://www.inspire.com/groups/ehlers-danlos-national-foundation/, someone might be able to offer more help there. [Mark]

Hi John, I am so sorry you aren't getting the help you deserve. I clicked on your name to see where you are. You aren't far from an amazing EDS expert! Dr. Rodney Grahame is in London. He is a Rheumatologist. Here's a link: http://www.uclh.nhs.uk/OurServices/Consultants/Pages/ProfRodneyGrahame.aspx

I know it is a ways to travel, but Dr Trepane is our geneticist at the University of Iowa Hospitals & Clinics (Iowa City, IA) & has been FABULOUS about coordinating care with other specialties. I don't know that would be an option for you but she is great. Maybe look for a research/university based hospital/clinic in your area that has a good genetics department? Just throwing out ideas...