Saturday, December 20, 2008


Researchers have finally identified the genetic address of Sickle Cell Disease. It’s BCL11A, that wonderful alphanumeric.

In a report from the National Institute of Health on Friday, December 19, 2008, they report, “Researchers have identified a gene that directly affects the production of a form of hemoglobin that is instrumental in modifying the severity of the inherited blood disorders sickle cell disease and thalassemia. The discovery could lead to breakthrough therapies for sickle cell disease and thalassemia, which could potentially eliminate the devastating and life-threatening complications of these diseases, such as severe pain, damage to the eyes and other organs, infections, and stroke."

This is only the beginning.

Researchers report that by suppressing the gene BCL11A, fetal hemoglobin (HbF) production could improve dramatically. They say, “New therapies targeting BCL11A would be the first to directly affect the natural processes involved in increasing HbF.”

They’re not there yet.

So, what does this mean? I don’t know, but what I do know is that if researchers can “target” the gene, then help is on the way.

I hope I live to see the day.


Friday, December 12, 2008

This Ain't No Pity Party

I was reviewing my blog and I kinda felt the “woe is me” vibe coming from my words. That is the farthest from what I feel, think or believe. I have Sickle Cell Disease, like millions of others. We all suffer in silence because no one can feel our pain for us. We all live past this pain. We all work, play, sing, and dance despite our condition. Heck, a few of us even do great things with our lives (shout out to T-Boz from TLC). So, this blog is not a pity party, a cry to the blues about my sad story, or even an indirect way of getting compassion. I live on anyway!

What this blog is is a light shining in the dark. The darkness of ignorance and suffering. This blog is a way to document the plight of people living with Sickle Cell Disease and offer an “inside look” at our suffering.

Do we want compassion? Yes. A warm hand on our throbbing legs is greatly appreciated. Do we want pity? Hell no! We lay in our hospital beds with IVs of glucose and blood flowing and all we want is a smile, our hands held, and your love. Thank you very much.

Friday, December 5, 2008

Work and SC

Most people are defined by the work they do. A fireman will boast about how many fires he puts out, a doctor will describe a perfect surgical procedure she has performed, or a singer will sing songs that people love to hear. Work is good, and a job well done always feels good too.

People living with Sickle Cell Disease, if they can work, press past the pain and limitation of their bodies and try to earn a living like everyone else. We take our medications and pray for painfree days. We get up eachday and give life the best we have. When Sickle Cell Disease, however, takes a more prominent place in our lives, work seems impossible. Simple tasks, like getting up and getting dressed can take all our energy. When this dreadful day comes, a person's sense of worth can come into question. They might ask, “Do I still matter?”, and “Am I of value to anyone or anything?”

I asked myself these questions when Sickle Cell Disease came and took my career away from me. No longer could I answer the question, “What do you do for a living?” I was sick and in pain, that’s all. The career I worked so hard to achieve for over twenty years was gone. Even though my mind was willing, my body and Sickle Cell Disease said “enough!” Since that time, I have made peace with Sickle Cell Disease. And I have concluded, I do matter, despite my illness. I have value, even if I don’t have a career to boast about.

The complications of Sickle Cell Disease are: (pneumococcal pneumonia,gallstones, enlarged heart, heart murmurs, myelofibrosis, anemia, enlarged spleen/destroyed spleen, enlarged liver, oxygen deprivation, high Blood pressure in the lungs, pulmonary hypertension, avascular necrosis, stroke and pain) should also include the loss of work, career, value, and worth.

Despite these losses, people with Sickle Cell Disease have to fight each one of these complications, and we must live on….anyway.