Introducing Rare Diseases- Optime Care- Find your Medications

Are you in a family with a rare disorder? Finding sources for information about rare genetic diseases can be challenging.  Even physicians may not have much experience diagnosing or treating some disorders.

Another term is "small patient communities".  There are internet sources that help you and your caregiver community in treating you.

A rare disease is generally considered to be a disease that affects fewer than 200,000 people in the United States at any given time. There are more than 6,800 rare diseases. Altogether, rare diseases affect an estimated 25 million to 30 million Americans.

NORD is a central source of information for patients and providers

The topmost common small patient communities:

Mad cow disease, SARS (no longer a rare disease.) Some diseases grab the headlines. ...

  • Morgellons. ...
  • Progeria. ...
  • Water allergy,"aquagenic urticaria" ...Yes, there is such a thing...only 30 cases have been reported
  • Foreign accent syndrome. ...
  • Laughing Death. ...
  • Fibrodysplasia ossificans progressiva (FOP) ...
  • Alice in Wonderland syndrome Strange things happen when you have an episode of AIWS
  • Your body parts or things around you may look bigger, smaller, closer, or farther away than they really are.
  • Straight lines may look wavy.
  • Things that are still may seem to move.
  • Three-dimensional objects may look flat.
  • Things may change colors or tilt to the side.
  • Faces may look distorted.
  • Colors may look extra bright.
  • People and objects may look stretched out.
  • Doctors aren't sure why some people have these unusual changes in perception. But it often starts when children are very young.

  • AIWS involves changes to parts of your brain that deal with sensory information -- what you see and hear. These changes affect how you see your own body and its relation to the world around you.

  • Doctors believe AIWS might be a type of migraine aura. Auras are visual and other sensory problems some people get before or during a headache. They can cause things like flashing lights, shimmering spots, ringing in your ears, or a tingling in your hands.

  • AIWS often happens before, during, or after a migraine. But it also can happen with these other conditions:

Introducing Rare Voices - Optime Care