The Designer, Part II

28 Feb

Some of you who subscribe to my blog might remember my post about the Craigslist hammered dulcimer that I purchased, restored and nicknamed the “XLH dulcimer.” That was back on October 18th, 2012, if you need a refresher.

I posted a YouTube video of the restoration process in a “slide” format (if you’re old enough to know what slides are!) and the background music is my arrangement of “Make Me An Instrument of Thy Peace” which I am playing on the XLH dulcimer. Here’s the the link, if you want to hear what it sounds like, and see the photos that I took during restoration. I recorded this song in the bathroom, which has great acoustics!

And speaking of XLH, today, February 28, 2013, is Rare Disease Day. Check out the website if you’re curious. XLH is on the list of rare diseases/disorders. It goes by several names, depending on which exact version you might have.

http://rarediseaseday.us/

So, while I’m posting links, here’s the link to NORD, the National Organization of Rare Disorders.

http://www.rarediseases.org/

There are over 6000 rare diseases in the world, most of them genetic and most of them affect children. Thanks to the internet, many folks who have these diseases/disorders  and their family members can connect with one another for support. As I have mentioned, I have never personally met anyone with XLH. But, the internet has made it possible for me to “meet” others with this condition, and offer support to them, as well as receive good advice from other people who share similar journeys. I wish my parents had had support like this when I was a little girl. I’m sure they felt very isolated since I was such an oddity. I’m glad today’s parents do have the internet support groups to help them! Thank you, Al Gore, for inventing the internet. Ha! Just kidding! Only if you live in the U.S.A. do you know why this is a joke.

I’m pretty sure that if I go to the Hallmark Card store, they won’t have a section of cards saying “Thinking of you on Rare Disease Day.” But, guess what? I am thinking of  all of you who have a rare disease today! Many have diseases that are even rarer and more debilitating than what I have, and many of my fellow XLH-ers also have a much worse time of it than I have. So, I’m thinking of you, whoever you are, and saying a prayer that you will find the help you need, the cure or treatment you need or the love and support you need to journey on in your life. I also pray that more doctors and researchers in the world will become interested in those rare disorders and diseases and finding cures and treatments. To me there seems to be a lot of money spent on researching things that don’t seem to be as important (I could name a few, but I won’t. Just watch TV and see the commercials for some of these medical problems that a LOT of money is spent on “fixing.”) Anyway, this year’s theme for Rare Disease Day is “Rare Disorders Without Borders!” There should be no borders when it comes to helping people in the world–sharing medical knowledge across international borders should be about making the world a better place, not making profit. (Read the main article in the March 4th Time Magazine called “Bitter Pill” if you want to get really disgusted about the profits in the health care industry in the U.S.A.) The organizers of Rare Disease Day hope that more medical advances can be made if international cooperation and the sharing of knowledge is encouraged across borders.

Wouldn’t it be great if people of the world could put down their guns and instruments of war, and pick up instruments of peace and healing, like medical  instruments and research equipment to ease the suffering of millions of people in the world, rather than create more suffering? I believe it would.

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One Response to “The Designer, Part II”

  1. cheese types May 24, 2013 at 4:58 pm #

    It’s awesome in favor of me to have a web page, which is beneficial in support of my experience. thanks admin

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