Monday, August 25, 2014

A Thoughtful Commentary on the ALS Ice Bucket Challenges

I am part of a lung transplant group on Facebook and recently another member posted a powerful message in response to the ASL ice bucket challenges circulating the internet. She has given me permission to share her message and it is definitely "food for thought".

Posted by: Kara D.
I wrote the following on my wall in regards to all of the ALS posts that has bombarded my wall, as I'm sure everyone else's...sorry in advance for the long post!

I am amazed that ALS has been able to raise so much money in such a short amount of time, and I am happy for them and their cause. At the same time, when I scroll through to see all the videos of people pouring buckets of ice water on their heads, I can't help but think, are these people donating, or just pouring water on their head because everyone else is doing it, and it's the "cool thing to do" right now? I wish there was some sort of trend I could start that would go viral to get organ donation awareness out there. I live every day half fearing if today is the day my lungs start to fail again. I look at my kids and see my oldest graduating this year...will I make it to see his graduation? In "good" shape? On oxygen? Or worse...not here?? What about my other 2 kids. My youngest will be in 6th grade. Will I still be here in 6 years to watch him graduate? Every day, my day is a big, fat question mark.

Not everyone is an organ donor. Some fear that if they are in an accident and the EMS sees you are an organ donor that they won't save you. FALSE! For me to even get my lungs, my donor had to have been declared brain dead at the hospital on life support. She could not have perished at home or anywhere else. Some think that they are too old to donate. I just recently read of a 92 year old woman donating when she passed!! Some think religion separates them from donating. Wrong again. Some people want to donate, but don't have it on their license, nor have they told their families of their wishes....the family that is grief stricken when they know they have lost you, wants to keep you whole and decides not to donate your organs, eyes, or tissues. That's at least 8 lives, probably more that could have been saved. There are so many that die while waiting for their life-saving transplant. Instead of the 1 donor that passes on, 8+ more people pass along with them. We need more education for everyone.

We also need more research money for transplants. I'm living on borrowed time, like I said before. My lungs could reject tomorrow...next week...next month...2 years from now...20 years from now. I don't know when, but they will. At this current time, transplant is NOT a cure. It's a temporary fix. A band-aid. With more research money, they could come up with new and improved ways to make it so your transplanted organs will become a part of you, instead of a foreign body in your system that every single day it's a fight and a struggle to keep them.

I'm not bashing ALS, or what they've done by any means. It's genius that they've been able to get in the spotlight the way that they have. I'd love to know or figure out a way to get organ donation awareness out there too...after all, it's a death sentence for us too.

I posted the below comment on a friend's post that said she would not be doing the ALS challenge since they have been blessed with so many donations already. She instead, is donating to the Arthritis Foundation in honor of her mother who suffers from osteoarthritis and will need surgical treatment.

My comment:
"Good for you! While ALS is a horrible disease, there are also so many other diseases out there that need attention, help, and awareness. Organ donation is one I'd like to see go viral. There are so many that die on the waiting list because there are not near enough people that have signed up...so we lose at least 2 lives, but many more when one person doesn't say yes on their drivers license. Plus any money raised could help researchers find a way to help make transplanted organs so they would never reject in the recipient. One is not cured after transplant...we are simply living on "borrowed time". I'm glad you are donating to a cause close to your heart instead."

My apologies on the long post...I just felt this all building up.

So what do you think of Kara's comments? Share in a comment below.

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Monday, August 18, 2014

What Color is Your Awareness Ribbon?

Since the early 1970s, awareness ribbons have been recognized and used to raise awareness of diseases and causes. However, so many designations have been made that it can be confusing to know what color represents the cause closest to your heart.

What Color is Your Awareness Ribbon?
To help answer that question, I'll list a few of the causes that I have come across during my ten-plus years of designing crystal awareness bracelets and handmade jewelry. For those of you who know me, you know topping that list are the following causes and nationally recognized awareness ribbon color(s):

Cystic Fibrosis -purple awareness ribbon
Organ Donation -green awareness ribbon
Transplant -green awareness ribbon
Lung Transplant -green with a butterfly as the symbol designating the transplant is specifically 'lung'

I've been honored over the years to also design custom awareness bracelets for a variety of related causes that include the following causes and nationally recognized awareness ribbon color(s):

Pulmonary Fibrosis -red and blue awareness ribbons
Asthma -gray awareness ribbon
Behcet's Disease -light blue awareness ribbon

If you do not see your cause listed, please check out the full and comprehensive Awareness Colors and Meanings article or the Awareness Ribbons by Cause Color article both by Crystal Allure Beaded Jewelry.

I hope this information has helped guide you in understanding some of the nationally recognized awareness ribbon colors for the cause(s) closest to your heart. And if you don't find your cause listed, please visit the articles, I'm sure you will find them there.

That said....What Color is Your Awareness Ribbon? Share in a comment below.

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Saturday, July 5, 2014

A Little About Joanne Schum

Please note: This article originally appeared on our www.lungsforlife.org site and is being re-posted to our new Lungs for Life website (www.lungsforlife.info). Please take a moment and update your bookmarks with our new website link. Thank you.

Joanne Marie Schum is the youngest of seven siblings of George and Katherine Schum. Growing up in the Rochester, New York area with Cystic Fibrosis (a genetic lung disease), Joanne led a rather normal life, attending college, working in her chosen career field and being with friends and family.

As she reached her mid twenties, life became increasingly more difficult until it was nearly impossible to maneuver and have any quality of life. That is when a lung transplant became the top priority in her life. She temporarily relocated to Chapel Hill, North Carolina while waiting for a bi-lateral lung transplant. She received her much anticipated transplant at the University of North Carolina Hospitals Chapel Hill, on September 12, 1997. Her lung transplant has allowed her to become involved with many organizations; volunteering as a speaker; writing for various Cystic Fibrosis and lung transplant newsletters; board member and mentor.

Never an athlete, in her post-transplant days, she has taken to biking, running, walking, swimming and she participated in the 2000 and 2002 United States Transplant Games. She no longer passes up an adventure and can be found driving tractors, motorbikes, and has also flown in a High Performance Schleicher ASK-21 Sailplane. Her continued great health will allow her many more days with her new 'wings of breath' so she can travel, work, play and enjoy her family and friends.

Update:
Joanne has compiled two very popular cystic fibrosis and transplant resource books:

Taking Flight -Inspirational Stories of Lung Transplantation

Taking Flight -Inspirational Stories of Lung Transplantation, More Journeys

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About This Blog

Welcome to the Lungs for Life BREATHE blog. It is here that I hope to keep you informed, provide resources and just stay in touch with asthma, cystic fibrosis, organ donation and transplant communities.

Feel free to contact us with any questions or concerns you may have. Thank you.

Credits

Our graphic images were designed and generously donated to Lungs for Life by a young man, James Binegar, who lost his fight with cystic fibrosis while waiting transplant. We deeply appreciate James' work on our graphics and for donating his time to LFL. He will be missed but his memory will live on through our use of his graphics.

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