Rare Disease Day 2010 is coming up - February 28th, 2010. Contact any and all government officials and legislators you can, as well as any other people you know. There are over 25 million persons with a Rare Disease - one that affects less than 200,000 people. In most cases this is too small a population to support research or treatment development. However, with over 100 diseases in this classification there are a LOT of individuals and families dealing with these maladies. You can go to http://www.rarediseases.org/ for more information. Your thoughts and support are needed and welcomed.
You may get this more if you read (or re-read) these older posts: "A Serious One" from 4/6/08 "Alphabet diseases" from 11/13/07 and "Questions" from 1/20/08 I am still trying to get answers to the Questions asked in the post above. I have not found any that are worthy of printing. I have come up with more questions: How does one handle seeing the continual decline of their spouse and not being able to do a thing about it? How do you take the inability of your 53 year old wife to get out of bed, or in and out of the shower unaided? How do you answer questions that beg not to be asked, like: will I see Bailey (our daughter, a rising senior)graduate; will Hannah (our granddaughter - almost 3) remember me; or will I see Landon (or grandson - 6 months) walk? How do you comfort your bride of 35+ years when she looks at you with tears streaming down her face? Most of all, how do you offer support and help when you are so damn mad at the world and the situa...
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