Resources

Being chronically ill drains energy. Check out some great resources that have helped me along my journey. And please email me if you have others to add to the list! In the words of Dr. Frasier Crane, “I’m listening.” 😉

 Autoimmune related

  • CIDP – CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) is a rare disorder of the peripheral nerves characterized by gradually increasing weakness of the legs and arms.
  • Autonomic Neuropathy – a nerve disorder that affects involuntary body functions, including heart rate, blood pressure, perspiration and digestion.
  • American Autoimmune Related Diseases Association, Inc. – the only national nonprofit health agency dedicated to bringing a national focus to autoimmunity, the major cause of serious chronic diseases.

Academic and research centers

  • Mayo Clinic – It is the first and largest integrated not-for-profit medical group practice in the world, employing more than 3,800 physicians and scientists and 50,900 allied health staff. Specializes in treating difficult cases through tertiary care.
  • Cleveland Clinic – a nonprofit multispecialty academic medical center that integrates clinical and hospital care with research and education.

Some of my favorite books

Some of my favorite blogs and websites

  • KevinMd – Over 1,000 authors contribute to KevinMD.com, a blog which shares stories and insights of many who intersect with the healthcare system: front-line primary care doctors, surgeons, specialist physicians, nurses, medical students, policy experts.  And, of course, patients, who need the medical profession to hear their voices.
  • POTSgrrl – Lauren Stiles’ story of misdiagnosis after misdiagnosis. A blog about Postural Orthostatic Tachycardia Syndrome for tweens, teens and everyone else interested in POTS.
  • ThePaleoMom – Sarah Ballantyne, PhD explores how to reverse autoimmune disease and heal your body with diet.

Online patient support communities: