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Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders - Inspire The Ehlers-Danlos Syndromes and Related Disorders Support Community connects patients, families, friends and caregivers for knowledge, support and inspiration This community is sponsored by the Ehlers-Danlos Society, an Inspire trusted partner
Common ethnic origins with EDS? - Ehlers-Danlos Syndromes - Inspire EDS genetically inherited from my father This mutated gene has found its way to people of all colors and combinations all across the world My mom thought it was an Asian (and Native American) tendency because Asians tend to have more flexible collagen
Physicians in North Carolina - Ehlers-Danlos Syndromes - Inspire The Ehlers-Danlos Society's Healthcare Professionals Directory is a great place to start when looking for providers in your area who have experience with EDS and HSD I also recommend checking out their Support Group and Charity Directory and searching for regional Facebook groups for people with EDS and HSD These groups can be super helpful
How does eds affect your sinuses? - Ehlers-Danlos Syndromes - Inspire I've gone to Dr Harrison for 15 years and he diagnosed me with EDS (albeit, last year) He's good I put him on the list But in listening to your problem, it sounds like Dr Maitland is the way to go She is the EDS champion She is now getting a steady stream of EDS patients And everyone is leaving happy to have seen her
Metabolize Pain Medicine Too Quickly - Ehlers-Danlos Syndromes - Inspire I'm his first EDS patient, but he's used to medically complicated patients with multiple problems My physician friend said similar things, adding that "Polypharmacy is the Twilight Zone," by which he means that if you're taking two or more meds, everything becomes much more complicated
Steroids and EDS - Ehlers-Danlos Syndromes - Inspire I wouldn't want to tell doctors that people with EDS can NEVER get fluoroquinolones because some might get adverse effects--there might be someone with EDS who has a terribly serious infection which isn't going to respond to some other antibiotic Then it just may be worth the risk of taking the fluoroquinolone
Need EDS diagnosis in Missouri - Ehlers-Danlos Syndromes - Inspire I have worked with him for years to build our knowledge about eds His p a is extremely nice as well My kiddos saw Dr Gorsky at the university of Missouri genetics department for their diagnosis He even caught another genetic condition in my youngest that saved her life He found it in time to save her kidneys He is very knowledgeable about
Physicians clued-in to EDS + adrenal issues? - Inspire Do not have EDS from what I can tell but hypermobile, POTS, mast cell activation--all the co-morbid conditions And understanding MCAS got me to talk local DO into cromolyn intervention However, was suspicious of CAH, since 15 years ago I read a light case could be related to female hair loss
EDS and Cancer - Ehlers-Danlos Syndromes - Inspire There are only 3 case studies on breast cancer This is a HUGE gap in knowledge for treating EDS patients who have cancer and in knowing how the cancer may progress Cancer research already knows that tissue morphology play a role in how tumors spread EDS patients of all types have different tissue compared to non-EDS people
EDS and chronic cough - Ehlers-Danlos Syndromes - Inspire My mom has an extremely rare EDS related complication called Mounier-Kuhn Syndrome, or tracheobronchomegaly It causes chronic cough and chronic pneumonias in addition to other lung related issues She was diagnosed with bronchiectasis, a common component of this condition, before being given this over-arching diagnosis