7000 Bracelets of Hope...

On Feb. 28, 2011 my outlook on my life was altered dramatically. I received a post on that day about it being World Rare Disease Day which linked me to the Global Gene Project and the 7000 Bracelets of Hope page. I thought wow…a chance to do something for the children who suffer and their families.  I have Polymyositis which I believe is under the rare category since it effects only1in 100,000 people. As an adult this has been a struggle for my family and I, since no one really understood the future challenges that we were to face. I cannot even imagine what it is like for a child or especially a parent to deal with diagnosis that very few people understand.

 

What caught my attention was the bracelet campaign. I thought here is something to pass on a bit of hope and support every day. I started making jewelry when a fall left me in a wheelchair and I had to give up my job. So I was all in with the bracelet project. These two blog really made up my mind to create some. A blog post from a parent …world rare disease-day-2011 and a blog from an artist The Rest of the Story left me certain I would be helping out.

 Sometimes it is the little things that can make a huge difference.  I had recently offered to make a necklace for a friend. I just really wanted to make her something easy to wear and would make her feel pretty when going to her Doctors appointments.  Her reply touched my heart in many ways… “That is the most kind offer! In fact  call me an emo, but tearing up right now!! I love everything...pearls, natural stone. but you surprise me! Anything you make is beautiful and I will like and treasure forever! It would be awesome to wear something to the doctors that you made so that I feel like I have piece of all my myositis friends with me, along with their strength.”  The fact that someone else thinks of me as strong…makes me feel strong in a way.

So I hope that the bracelets pass along a bit of hope, strength and good karma to all those who receive them. And they know that there are people who understand. And you to can send hope to a child.

Myositis Monday with a little music

Today is National Myositis Awareness Day! Today is a to recognize all those living with this disease, as well as the friends and family that love and support them. Today, ask at least one person if they've ever heard of Myositis. If they say no, educate them. That’s one less person who doesn’t know about myositis.

This day remains a milestone for people with myositis, a chronic autoimmune muscle disease, and it gives The Myositis Association and its members a chance to educate the public. Unless you have a friend or relative with myositis, most likely you've never heard of it. Numbers of patients affected are small – about 50,000 in this country. Go to myositis.org to learn more about this disease and its 4 forms.

There is life after myositis it is just different! I was diagnosed in Jan. 2007 and yes, life is very different. But today's music is from Barenaked Ladies.."One Lttle Slip"
“Today is a new day”… Chicken Little.

Thanks for stopping by,

regina aka red