February 19, 2013

Let’s Measure Our Progress by Education, Treatment Advances and Research, Not Ribbons

By Amy E. Kelly-Yalden

Amy Kelly-Yalden
I have been with the Lupus Foundation of America’s Southeast Florida Chapter as its President and CEO for two years but lupus has been in my life for decades. My sister and best friend, Erin, was diagnosed with lupus as a teenager, although like many people with lupus she showed symptoms for years before being diagnosed. We spent our lives not knowing much about this disease outside of what her doctor told us. There were no events or programs we could attend. No community to be a part of. Our family lived with lupus as best as we knew how. We all felt very alone, especially Erin. Hospital visits became a norm. Clinical trials searches became a part of her life, as she had exhausted the way too small list of treatment options that existed. She made it look easy. She graduated from college, became an Exceptional Student Education Specialist for Broward Schools, married, and had three beautiful boys. It wasn’t easy. Lupus isn’t easy. Four years ago this month, my sister and the mother of those three boys died from lupus complications at the age of 34. This disease turned my family’s life upside down for as long as I can remember, and it still does.

We aren’t alone. The difference now is that families who are embarking on their lupus journey have more treatment options, resources, and an organization like the Lupus Foundation of America to support them, advocate for them, and raise awareness, so that saying “I have lupus” doesn’t have to mean explaining that it isn’t contagious and yes, it is serious.

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

Do we have a long way to go? Yes we do! But let’s continue to blaze this trail in the unique way that the disease itself is. Let us not sit, wish, and hope for the way “that” disease is positioned in the marketplace. Let’s all do our parts, like the volunteer who spends their day loading water and supplies on a truck before a walk; the young woman with lupus sharing her story of hope with a recently diagnosed college freshman; the newly married couple who attend Advocacy Day to ask Congress to do more just a short time after the wife was hospitalized due to a severe lupus flare; the man who attends a seminar and has an impromptu get-together with other men living with lupus; the mom who got her whole family to wear purple on a family trip to Key West for Put on Purple’s southernmost picture of the day; and the husband who attends a caregiver support group and shares how he has supported and loved his wife for decades by “slowing his roll.”

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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