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Letter: Rare Diseases Have Many Victims But Little Funding And Research

Feb 28, 2015 10:12AM ● Published by Bill Gilman

(Editor's note: There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day. 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population. That equates to roughly 2,900 people for a town of Tewksbury's size.)

To The Editor:

Today, February 28, is World Wide Rare Disease Day.

I have to say, I've had a good year this year. I've avoided most hospital stays and I have felt more hope for a longer future than I have in quite a while. I'm not blind to my disease and I know that each day is a flip of the coin but I also know that I am stronger than a rare disease. I know that I am stronger than my disease because of my army of fighters - friends and family - who fight along side me, and who - when I can not fight - fight for me.

That is the purpose of World Wide Rare Disease Day. It is letting everyone who has a rare disease know that no matter how alone you may sometimes feel there are so many others who are fighting for you, so much support and so much love - even from folks you barely know and sometimes from folks you don't know at all! My oldest childhood friend Keith Watman also has a rare disease. It's so funny that we played together EVERY day in our childhood.... from the time we were in diapers... and we are fighting our own similar battles everyday now, and from all I can see, we fight it the same way, with our army of supporters and our future hopes and dreams.

I have a rare disease called LAM (Lymphangioleiomyomatosis). This is a terminal disease with no known cure. I'm one in a million, baby! wink emoticon BUT, this disease does not control me! I am absolutely in love with my children, with John, with my life! I can not ride anymore, but still enjoy the love of my horses. I have found a new passion with my sweet little goats. I am watching my future learn and teach me at the same time when my daughter is working along side me. I know my sons are always giving 110% of themselves. I know my family and friends are more than true blue. And I KNOW I have an amazing group of angels guiding my path! I am blessed in so many ways! 

My oldest and dearest friend Keith has another rare disease called Kearns-Sayre syndrome (KSS) which affects him in so many ways, yet you can always count on a smile on his face and an ear to lend. He is, by far, my truest friend in more ways than I could ever tell you and I love him dearly for so many reasons. The fact that we are both battling rare diseases is somewhat bittersweet, as there is no one more deserving of a wonderful, happy & HEALTHY life than Keith, yet no one who I would rather count on to show me how to handle tough days with dignity and an amazingly wonderful outlook!

Now the important part: ******All I ask is that (if you've made it to read this far....) is that on Saturday, Feb 28th, you take a moment and donate to a cause that has changed even one person's world or even just do something small to make someone smile. Maybe donate to a charity or purchase a cup of coffee for the older person standing behind you at Dunkin Donuts, or well.. you get the picture. Then, just tell them "I know someone who is fighting a rare disease. Today is World Wide Rare Disease Day and I want you to know that." (I know, it sounds silly, but if some stranger bought me a coffee, I would remember why and I would tell my family about it at dinner that night.... that's how people become aware!).

OK.... last thing here.... I read a poem once that REALLY struck me. One of lines said
"And she wished one day she would live, and not just survive".
**I want you all to know that today, I am LIVING! smile emoticon

This last poem that I am going to share was e-mailed to me by a dear friend at a very difficult time I was having with my diagnosis. I actually printed it, framed it and hung it on the wall in my bedroom. I actually spend a moment every day to read it.

"Pilgrim," by Anne Morrow Lindbergh

This is a road
One walks alone;
Narrow the track
And overgrown.

Dark is the way
And hard to find,
When the last village
Drops behind.

Never a footfall
Light to show
Fellow traveller---
Yet I know

Someone before
Has trudged his load
In the same footsteps---
This is a road.

Jennie Nagle
Tewksbury

A message from Jamie Lee Curtis about LAM

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Opinion, Today letter to the editor rare diseases worldwide rare disease day LAM

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