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...

2016: From Wheelchair to first place This year has been one of   miracles   and hard work. In January 2016 I went on a family holiday to Dullstroom. I was so physically weak, my husband had to push me around this tiny tranquil town in a wheelchair. For short distances, I was able to use my walking cane, but facing a set of stairs felt like trying to climb a cliff face. I didn't know how I was going to keep on going much less working. Flash forward to December 2016. I am working 27 hours a week. I am independent in driving and all my self-care.  Even better than that, I have been able to not just start competing in dog agility but, win a few first places! What was my secret potion, you may ask? Honestly, there was no one specific thing, but a combination that worked for me. Just like replacing the blocks of my Jenga Tower . 1)      Having the right medical team I am privileged to work within the medical field and always have a...