Help solve the Cruel Mystery

I know I’ve said raising awareness is the purpose of this blog, why I walk, why I share my story. But let’s be honest to further lupus research and lupus treatments we need money.

There are plenty of ways to donate:

My walk page is still open until the end of May

Make a general donation to the Lupus Foundation of America

Funds donated to the Lupus Foundation of America go to medical research, patient support programs, community education, and advocacy for public policies. The LFA has been instrumental in providing support services for me. I don’t know how I managed this disease for so long without the help of my local chapter.

Make a donation to the Alliance for Lupus Research

100% of the donations to the ALR fund lupus research. Since 1999 the ALR has given $81 million to 159 research programs. One of their funded programs (the study of B-cells) helped pave the way for Benlysta, the first lupus drug in a century.

Purchase one of these awesome shirts and $8 of every sale goes to the ALR.

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No donation is too small. Even the change between the couch cushions helps. Thank you to those of you who have donated, and thank you in advance to those who intend to donate.

Oregon Baseball and the fight against Lupus

My family at Oregon's PK Park

My family at Oregon’s PK Park

Tonight at 7pm the Oregon Ducks will take on UCLA in not only a huge PAC12 series but the first ever Lupus Awareness Night hosted by the University of Oregon baseball team.  My brother Jeff or “Bucky” as I’ve always called him “pitched” the idea to the baseball operations manager who got the ball rolling. Tonight my baby brother will throw out an honorary first pitch (he’s not scheduled to start) and deliver a short pre-game speech with my dad. There will be raffles, donation buckets, and a lupus information table manned by the lovely ladies of the Pacific Northwest Chapter of the Lupus Foundation.

Wednesday evening The Oregonian published a story on Bucky and me. Read it here! I had a 15 minute phone call with the reporter who then spoke with Bucky later that afternoon. Now yes if you read the article you will definitely get that my brother marches to his own “beat.” But, what surprised me is the fact that he knows how sick I can be.

That's him on the right...just a little wacky

That’s him on the right…just a little wacky

When I was first diagnosed Bucky was only 12. Then I promptly left for college and didn’t return until three summers later. I was very ill that summer, unable to get out of bed most days with rounds of tests at the hospital. But, he was still a kid, running around town with his friends without a care in the world. After graduate school I moved home, Bucky’s senior year of high school. That year he did a project on lupus for his health class. He and his two friends interviewed me. It wasn’t until I explained my daily pains, lack of energy, and organ complications that he started to understand.

I don’t want to say my brother is selfish because he’s not. But, he comes across as very carefree. I took that carefree attitude as a lack of empathy. This article proved me wrong. Bucky may brush me off when I ask about the speech “I got it, yah whatever” but my dad told me he’s been practicing what he’s going to say. He’s acknowledging my fight to his teammates and the local reporters. He even got every guy on the Oregon baseball team to donate a few bucks to the Lupus Walk. The Oregonian article was posted to his Facebook page by his non-baseball friends and received hundreds of likes.

I wish so badly I could be in Eugene tonight to join my family. It’s been a year since I’ve seen Bucky and this week makes me miss him terribly. I couldn’t be happier than he’s helping bring awareness to lupus and encouraging others to do the same. I love you Buck.IMG_0033

If you’re in the Eugene area please head out to PK Park tonight (Friday April 19th) as the Ducks host UCLA. Get there early for the acknowledgement of Lupus Awareness Night.

 

A new way to think about lupus

Last weekend I attended the Lupus Foundation’s Lupus 101 seminar at Piedmont Hospital in Atlanta. While I’ve had lupus for 10 years and am well versed in the ins and outs of the disease, I wanted to take Sean to further his understanding and thought it wouldn’t hurt to hear another doctor’s perspective. Rheumatologist Dr. Gary Myerson was the speaker and he was brilliant!

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Dr. Myerson explained lupus as follows: Your immune system is a big game of cowboys and indians. The cowboys are protecting the fort (your organs) and instead of attacking the indians (foreign invaders/viruses/bacteria) the cowboys get confused and attack each other. How simple is that?!?! I think for people who don’t understand the disease it is a wonderful analogy.

After a battle (flare) there’s a big messy battle field; dead cowboys, dead indians, dead horses, a burning fort. You know the scene from the movies.

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But what no one ever tells you is who cleans up the mess. In your body, it’s the compliments or C3 and C4 as us lupus patients know them by. If your C3 and C4 levels are low that means there are too many battles, too many attacks and your body can’t clean up the mess fast enough. C3 and C4 are the measure of your disease activity.

I have always known what lupus is, what the symptoms are, what to look for in my blood work. I always knew what, but I never knew why. Dr. Myerson told me why. Thank you so much to the ladies at the Georgia Chapter of the Lupus Foundation for seminars like this one. They are so incredibly valuable.

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Stop Comparing

Remember when I said I hate cancer? I still do, but today I read a blog featured on the Lupus Foundation of America’s website that reminded me not to compare lupus to cancer. It’s not easy but it’s a gentle reminder that lupus awareness has come a long way since I was first diagnosed and even since I was at my worst six years ago. I needed to read this. I need to remember that some people do care and there are plenty out there not only fighting this disease but fighting to bring awareness. It may take me awhile to stop comparing lupus to cancer, but one day I’ll get there. Keep reading for an excerpt of Amy E. Kelly-Yalden’s blog :

Shift – to move or cause to move from one place to another.

I have had the privilege to be a Co-Founder and Executive Director of one of the largest cancer organizations in the world. In a little over a decade I was able to play a part and witness a complete shift in the disease – from awareness to increased screening rates to the approval of just one to over a dozen treatment options.

In the last two years since I have been with the Lupus Foundation of America, I have seen and felt a similar shift in lupus. Can you? We are moving this disease from a place of little to no awareness, no drug ever specifically developed to treat it, and support and services that were lacking, to buildings being lit purple, buses touring the country as part of the Help Us Solve the Cruel Mystery™ National Tour, new treatment options being approved, more programs and services being offered, and more than two dozen companies studying potential new treatments for lupus.

We have branded the disease as the cruel mystery, and we have issued a call to action by asking people to help us solve it. This disease is cruel and it is a mystery. There is no cure. It looks different in everyone. There is no clear path. There is no end. The public doesn’t understand it, causing a lack of empathy. My sister was receiving the same treatment regimen at one time that my grandmother was receiving for cancer. My grandmother’s friends and neighbors brought food, offered rides, and sent cards and flowers. No one did that for Erin. After all, it was “just” lupus.

Every day, hundreds of people hard at work at the Lupus Foundation of America and in its network of chapters, and ambassadors across the country are working to change that mentality and shift the course of this disease. We will not accept inaction. Neither should you. It will take each and every one of you raising your voices and asking your friends, family, and colleagues to help us solve the cruel mystery of lupus.

A pink ribbon is not a unit of measure 

I have heard many people in my nonprofit career get frustrated at the “pink ribbon parade.” I implore you to not compare our progress to the breast cancer movement. Every disease wants that type of awareness. I have seen too many get caught up in that comparison. Every disease is vying for an athlete to wear its color, a yogurt lid to have its symbol, and 30,000 people to show up for a walk.

Let us celebrate our progress by measuring where we have come from, rather than making the pink ribbon the unit of measure. For me, I measure it in the four years since my sister died. Since then we have had the first drug specifically developed for lupus approved and more drugs in the pipeline than ever before, funded research that is helping diagnose the disease and track its progression and activity, branded the disease to help the public understand it better, funded the first-ever pediatric lupus research program, lit up landmarks across the country purple, held walks uniting thousands in each community, created programs and services that help people living with the disease live better, and formed the first ever Congressional Lupus Caucus, to name just a few.

The roar of 1.5 million people and their loved ones is much louder than a few
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There are plenty of ways to get involved and make what we do now bigger and better. I urge you to come out to walk and to a seminar, sign the cruel mystery petition or visit the tour bus if it is making a stop in your town, join us on Capitol Hill in June, celebrate Lupus Awareness Month in May, get involved with your local chapter, or simply share your story. Ask those who know you to play a part and help us solve the cruel mystery.

I guarantee you that if each and every one of you reading this does more than you did yesterday, a year from now we will be adding much more to our list of successes — a lot less people will feel alone with this disease, the general public will no longer need an explanation of lupus, lupus research will see increased funding and we will be enjoying our own purple parade in honor of all those living with lupus and in memory of those we have lost.

And one day…this disease won’t be as cruel or mysterious.

Amy E. Kelly-Yalden is President and CEO of the Lupus Foundation of America’s Southeast Florida Chapter

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