Friday, March 27, 2009

Sickle Cell & President Obama

My sister sent this to me from a friend of a friend. Guess Sickle Cell is in the eye of our new president after all!

Hi All,

In our continuing efforts to spread awareness about Sickle Cell Disease...Gabriel and I got to meet with Pres. Obama on this past Tuesday! Can you say WHAT A GREAT DAY!

Tuesday was Sickle Cell Awareness Day on Capital Hill! :)
We also met with Congresswoman Sheila Jackson Lee (D. Houston, Texas) ; Congressman Danny Davis (D. Illinois), Congress woman Donna Christensen (D. U.S Virgin Islands); Congress woman Barbara Lee (D. Oakland, California).

But we met with President Obama for 10-15 minutes in the Oval Office. He joked with Gabriel about the gifts Gabriel gave him. He was sooooo kind!

The Austin American Statesman interviewed us both this morning about the story...
There are more photos but this is all we have been given so far. Only the official White House photographer is allowed to take photos of the president in the White I was not allowed to take any photos with my camera. But NOTHING could spoil that day!

It was a HUGE blessing!!!
God is incredibly GOOD!!! :)
Shelly and Gabriel George

Thanks to all those that have sent in links!

Sickle cell was also included in the inauguration:

Tuesday, March 24, 2009

Bone Marrow Transplant + Chemo is the new 'Cure'

Hey everyone. I just got this link on some research conducted at John Hopkins University related to sickle cell. The article talks about Chemotherapy as the new adjunct therapy in BMT patients...feel free to go ahead and read it.
According to Sophie Lanzkron, director of the Sickle Cell Center for Adults at Johns Hopkins University, 30 percent of sickle cell patients experience pain 90 percent of days. "This is a tough disease; they have intermittent episodes of excruciating pain — they can’t go to college or have careers. Patients spend their lives just trying to manage the pain.”

With no objective measure of the disease, Lanzkron said patients are frequently stigmatized when they seek medical attention — being mistaken for addicts in search of narcotics — and treated with disdain by emergency-room personnel unfamiliar with the disorder.

The physiological consequences of sickle cell anemia include severe damage to organ systems, particularly to the kidneys and lungs, and can reduce life expectancy for those with sickle cell to the mid-40s. Complications include life-threatening infections and stroke — even in young children.

Children who suffer intermittent attacks miss school with predictable consequences for their lives and for their futures. Meanwhile, their caregivers must miss work to tend to them. Added to this are the health-care costs. Sickle cell patients, Lanzkron said, are often “understandably depressed."

Read the rest of the article HERE

Okay, I know I'm the exception and not the rule, but my life isn't as miserable as this sounds. I went to school, got a degree, have a great, demanding job as a nurse and balance a full life. I think that part of the stigma of sickle cell is also purported that those that 'know' about the disease and the sickle cell patients themselves. Sure, it's not a walk in the park, but it's not a death sentence either. Save me the pity party...I'm not buying any of it.

My life is as vibrant if not more vibrant that my siblings and friends without sickle cell...and yours can be too. Please don't let the dour tones and gray color your views on life. We are not invalids. We just have a painful condition, but with balance, good lifestyle habits, medication and support, it can be controlled. Having sickle cell is not the end of the world.

I'll jump off that soapbox for a moment. The article goes on to talk about Patricia Newton, one of the first cured sickle cell adults. Good for her! Congratulations Patricia. The more I read about Bone Marrow Transplants however, the more I realize that it's not for me. Not only is it undeniably risky, most adults can't find a good match due to the high number of transfusions we've had. Add on the chemo, the long hospitalization (sometimes up to a year), and the lifetime of taking steroids and immuno-suppressant drugs, and it just sounds like the benefits don't outweigh the cure.

Perhaps I would think differently if I was a different sort of sickler. After all, I only used to have pain 85% of the time, and I only had a major crises every 3-4 months. And now on Nicosan, crises and hospitalizations are a distant memory. I don't think I'm the right person to advocate BMT right now...I'm just in a really, really good space.

Sickle cell is not a death sentence. It's not the end of the world. Having sickle cell is like having any other disease, learn it, deal with it, survive it. Don't let your condition own you.

Thursday, March 12, 2009

Nicosan Fan Mail

This letter just brought it home for me...all the stress that I've been going through getting Nicosan to my dear users in the US. It's been difficult maintaining with all the business and economic setbacks both here and in Nigeria, but this note from a Nicosan user just reminded me why I love what I do!

I just wanted to let you know that i have been using Nicosan for a
month now. It has been very helpful. I have sickle cell anemia and
usually have crisis in the month of February when it gets cold in
Philadelphia but I was able to ward it off this year. I just ordered
another pack and I'm saving so I can order the pack of 12. Thanks so
much for introducing me to this drug. I am very excited for my future
now even though i have very few crisis, i am an athlete at heart and
hope i will be able to participate in the activities i love.

Awwwww! Keep doing your thang girl! And I hope Nicosan will keep enriching your life that way it has changed mine.

Tuesday, March 10, 2009

Research Study

This is not my research, therefore I do not have additional information about this project. It is being conducted by Kimberly Grace, a PhD student at Alliant International University. For questions and contact information, please click the link to the survey.

For anyone over 18 with sickle cell, please consider participating in this project. It will only take a few minutes. I already sent mine in and am looking forward to the results.

*Please note that you must be living in the United States to participate AND the survey will be closed in just a couple of days*

Also, feel free to pass this along to anyone you know that may qualify.

Saturday, March 7, 2009

Live Your Pain

Scars that bind
Tears that fasten me to u
Our pain unites us
So be true to this emotion
live without shame your wounds
Carry your head high as the tears flow.
Let the tears fall and express your pain
without reservation, without regret
because the more we share our pain
the closer we become.
Pain shared is real, true, pure
I can’t fake pain, so why do I try to hide the most true part of who I am?
Why are we so ashamed of that which makes us most human?
Why do we hide our tears and fears and put on a mask that is not us?
Void of pretense pain exists to connect us, it exists to remind us, it exists to unite us.

So live your pain
Live it out loud
Let the tears fall
No shame.

By: Kafo, 2009 aka lil sis