Snowflakes and Spoons

February 28th is world Rare Disease Day! When I was diagnosed I didn't know MG was classified as a rare disease. Here are some answers I found to the questions I had about rare diseases from scholarly articles. What classifies as a rare disease? Simply put, very few people have been diagnosed with a specific type of disease i.e. Myasthenia Gravis.  More scientifically, 1) A disease must have a prevalence of <200,000 persons in the U.S.  2) The Orphan Drug Act also defines diseases as “rare” if they affect more than 200,000 persons in the U.S. if “…there is no reasonable expectation that the cost of developing and making available in the U.S. a drug for such disease or condition will be recovered from sales in the U.S. of such drug.” Therefore  the costs to making a cure/treatment of this disease would not be recuperated if they sold it in America. A disease like diabetes would therefore not be considered. How many rare diseases are there?  It is est...

Have you ever felt like your hiding from the world or that nobody understands what you are going through? It may be because you are wearing a mask.  Putting on a mask is an instinctual behaviour. Think of the caveman, even though he was scared out of his mind he would stand tall, pout his chest and roar back at the lion. The problem is that we have gone from self-preservation to self-damage. We have gone from having a   Functional mask   to an Avoidance mask   The 6 main masks we wear  Strength Mask This person is always seen to be coping, has everything together and always has a plan.  They are the strong ones when everyone else falls apart.  "I can cope no matter what life throws at me" "I can do it myself, I don't need help" Intellectual Mask This person feels special, influential, valuable and better than others. they often don't listen, to advice and pretend to know everything.  "The r...

Seeing double? Visual accommodations for MG warriors  Myasthenia Gravis affects the muscles around the eyes. This can lead to double vision (diplopia), drooping eyelids (ptosis), dry eyes and trouble focusing. In addition, some of the medications used to manage MG can cause cataracts. 90% of MG warriors suffer from some form of ophthalmic impairment. 1   Below are practical solutions you can use to help ease the strain on your eyes.  Change all fonts to large.   Install screen reading software i.e. SpeakIt is available for free as Google Chrome extension   Control glare by adding a glare screen to the computer  Install proper lighting, dim lighting will cause strain on your eyes Allow frequent rest breaks Magnify written material using hand/stand/optical magnifiers Alternate covering one eye with an eye patch Use a cold compress over your eyes to ease muscle tension and 'revive' your eye muscles.  Use sunglasses and sun viso...