Friday, June 3, 2011

Sickle Cell, fighting an "Orphan Disease" without a face

Julie, Rebekkah, Danielle, Kayla, Jada, Jasmine, Jannifer.......

I'm not certain how you generate interest in the Indianapolis 15th Annual Sickle Cell Walk, when on any given basis it is known as, "An Orphan Disease." My daughter understood that at 10 years of age, others not so quickly.   I'm not quite sure what the correct definition of Orphan Disease should be, but in my experience it boils down to dollars and cents.  If there are no clear cut ways to make a profit, it becomes harder to attract pharmaceutical and health care support for a tremendous cause.  
While it might be an orphan to someone, I have a friend who has been fighting the disease her entire life, and the last thing anyone with Sickle Cell needs is another missed opportunity to promote awareness.  We need encouragement to know your sickle cell status, hope for a cure and the advocacy needed to help educate people to understand why they should care.  The 15th Annual Sickle Cell Walk offers an opportunity, but people will really make the difference for the upcoming Be The Match Bone Marrow Drive and Charity Walk. 
My personal connection with Sickle Cell came as an adult when I had complications with each pregnancy.  My doctor asked if I had Sickle Cell or Sickle Cell Trait and I said no.  She tested me anyway and indicated that I was a carrier.  Wow.  How is it even possible for an adult to have the trait for a serious chronic disease and be completely unaware?  I had been married nearly 10 years, I was well past 30 years old and I was clueless about my anemia, Sickle Cell Disease and a host of other factors that make it ironic that I'm now a champion for the cause.  It simply makes no sense to me that due to the population that is impacted, the treatment regimen, the lack of advocacy and pure disparities in health care - Sickle Cell seems to be a lost cause in our society.  There is so much work to be done. 
A sorority member shared recently that she lost one of her sands due to Sickle Cell Disease.  I was quickly doing the math and realizing that this was another young woman who likely never saw her 40th birthday.  Team Rebekkah has been created in her honor, and I'm reminded about what can happen with the passion of a committed few.  How many Rebekkah's do we have to lose before we realize that lives are too precious to ignore the impact of this deadly disease.  Based on life expectancy with SCD alone, I'd be past my prime.  I look at my children, my life, my friends, my church, my community, my family and I realize that I'm a fragile work in progress - and I have so much work to do.  How is it that people  don't see the need to eliminate this "Orphan Disease" orientation - it would lessen if we rallied together and had a collective voice about why Sickle Cell matters.  Team Rebekkah will be doing that as they celebrate the life of a young woman that matters.  Not mattered.  She continues to matter enough to be a catalyst for action.  Her life matters. 
So, a campaign to register donors for bone marrow transplants comes to the 15th Annual Sickle Cell Walk on Saturday, June 25, from 7:00 a.m. – 12:00 noon at Riverside Park.  That's what I thought I was going to talk about as Martin Center, Inc. celebrates over 40 years of service to the Sickle Cell community, the time is now to encourage all community members to Be The Match and give hope to those who need a bone marrow transplant.  I'm flooded with stories, people, young women who matter, and I believe that each of those lives should generate more interest. More support. More action. 
I'm drawn to the stories of young women.  There is a 14 year old young woman in New York, Hunter, that has been cured from the disease as a result of a bone marrow transplant from a non-related donor.  I'd like to think that stories like hers resonate with enough people to make Bone Marrow Registry important.  I'd like to think that we care about the value of a life beyond socio-economic status, culture, race or ethnicity.  After 4 decades of life, however, the writing seems all too clear.  The growing population of people impacted by Sickle Cell Disease doesn't seem sexy enough to garner the attention, research dollars, support, advocacy and momentum needed to change the future.  My writing hiatus has ended because I just don't understand it.  How is it possible to know just one of these stories and not take the time to get educated and take action? 
The Bone Marrow drive effort on Saturday, June 25, at Riverside Park in Indy is free and open to the public, starting at 7:15 a.m.  A person needing a bone marrow transplant (recipient) needs to receive marrow from someone whose tissue type is close to his/her own type.  It is more likely that a donor who comes from the same racial or ethnic group as the recipient will have the same tissue traits.  Less than 30% of registered donors are individuals of color, although Sickle Cell Disease and other chronic diseases do not discriminate.  I am encouraging anyone who will listen, and ALL of my community members to Get Involved, Give Back and Live Smart.  
Individuals can register for the Sickle Cell 5K Walk/Run for $20 which includes a commemorative t-shirt, at  Proceeds from the walk support the needed programs and services including an onsite food pantry, scholarship fund, free screening services for sickle cell, cholesterol, blood pressure and glucose, in addition to needed educational & social services provided by Martin Center.  The reality is, however, that is only part of the story.  We need to get educated, rally together, advocate and change lives.  
Demitrea Kelley, Miss Black Indiana 2011, is changing lives too.  This young woman has a reason to be passionate, as SCD hits really close to home for her.  I'm more impressed, however, that my fellow Boilermaker was driven to organize a Blood Drive and get people to do something to bring awareness to this disease and save lives.  Transfusions are a reality for those who are impacted by this disease.  I know all too well the concerns, fears and impact of having a blood transfusion, much less a lifetime of transfusions.  This young woman realizes the power of one.   We'd be in a different place if each and every one of us realized our power, together.  Demitrea gives me hope that young women that I'm close too will recognize their power, rally beyond their pain and tell their story.  The disease does not discriminate agains socio-economic groups, race, ethnicity or brilliance.  I know a fiercely smart, gifted and blessed high school student with amazing potential that fights this deadly disease every day.  I want her to realize that there are millions of us standing next to her, ready to support her, ready to fight for the cure that she deserves.  Until then, she has a life to lead and a legacy to create, and I want to see it written with energy, with excellence and free from constant pain. 
Marrow transplants are the main treatment for certain life-threatening diseases like Sickle Cell.  Only 30 percent of people who need such transplants have a family member who can donate bone marrow. The other 70 percent rely on people who have registered with Be The Match so they can provide bone marrow for those who need it.  I have a friend who has been sick for the past week, and I don't know her pain.  I do know that she is in pain, she is a mother, she is a wife, she is in pain and she cannot reach her fullest potential on pain medications.  Her story matters to me.  There are 100,000 stories.  Who do they  matter to? 
My plea is simple: Get Involved, Give Back, Live Smart.

The 15th Annual Walk hosted Saturday, June 25, 2011 is timed 5K Walk/Run with a Kid’s Zone Activity and Education Center.  Riverside Park celebrates their 100th Anniversary with this historic 5K Walk/Run, where community members, volunteers and clients alike join together to increase awareness about Sickle Cell Disease.  Interested individuals can register at  Martin Center, Inc. is a 501c3 tax-exempt, charitable organization.

If you are reading this, you can make a difference today!  I'm simply wondering does it always have to hit close to home before we do something.  I feel like I'm always doing something, but maybe I'm not doing enough.  I have platforms, I have stories, I have recommendations, but I require more action.  The lack of movement makes me absolutely nuts.  I don't have to walk a mile in someone else's shoes to realize, they really hurt.  Pain shouldn't be a way of life, but a call to action. 

  • Register to join the 5K Walk/Run on June 25, 2011 by logging onto and clicking on the walk logo sponsored by HotBed Creative.
  • Make a tax-deductible contribution at the walk registration site, or mail your donation to 3549 N. College Ave., Indianapolis, IN 46205.
  • Volunteer as an individual, group, or team – June 24 and June 25, 2011, call 927-5158 today.
  • Honor the life or the memory of a loved one by Getting Involved, Giving Back and Living Smart.  Martin Center, Inc. needs you.

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