Monday’s Best: Adeja Johnson Foundation

Always looking to shed light on a great cause, this Monday’s Best was suggested by a few of Desperate America’s dedicated Twitter followers.  The story of Adeja Johnson and her fight against Sickle Cell Anemia hit a cord and the foundation bearing her name, created by her mother, instantly became something worth writing about.  The plight of Adeja and her mother Bridgett is one filled with hope and inspiration.  Today’s edition of Monday’s Best features the Adeja Johnson Foundation and its fight to educate and help families affected by this disease.

Sickle Cell Anemia is an inherited blood disorder that affects the red blood cells.  People with sickle-cell disease have red blood cells that contain mostly hemoglobin S, an abnormal type of hemoglobin.  Sometimes these red blood cells become sickle-shaped (crescent-shaped) and have difficulty passing through small blood vessels.  When sickle-shaped cells block small blood vessels, less blood can reach that part of the body.  Tissue that does not receive regular blood flow will eventually become damaged.  This is what causes the complications of sickle-cell disease.  Currently, there is no universal cure for the disease.  A simple blood test can check if someone has the sickle-cell trait by sending an electric charge through a hemoglobin solution.  Depending on how the cells react, the results can detect normal hemoglobin, sickle-type, and other types of hemoglobin.

Adeja Johnson was still an infant when Bridgett brought her into the doctors noticing that Adeja was crying more than the average baby.  It was soon discovered that the young Adeja suffered from Sickle Cell Anemia SS, the worst case of the disease.  Many hospital visits later, a few concerned doctors entered Adeja’s name for a chance to participate in a clinical trial at Duke University.  Three weeks later, a phone call came in that confirmed her inclusion in the program.  On May 27, 2009, Adeja underwent a Cord Blood Transplant.  The transplant was a success and her condition improved at a remarkable pace.  However, in December of the same year, she began complaining of severe headaches.  A visit to Duke University discovered a brain tumor.  The tumor resulted in seizures.  Adeja’s saga took a turn for the better as she was able to fight past the tumor and return home at the beginning of this year.  However, as of May 27, 2010, Adeja has been in the hospital with liver problems.  She is still fighting and her mother Bridgett remains strong.

Sickle-cells block the flow of blood vessels. Colder weather make the condition more painful as the blood vessels contract due to the cold.

Bridgett founded the Adeja Johnson Foundation in the hopes of establishing awareness within the community about Bone Marrow, Cord Blood transplants and other procedures to help find a cure to diseases that have yet to be neutralized.  The foundation is looking to expand into community programs to bring attention to sickle-cell anemia, HIV/AIDS, and other diseases.  A larger goal is to be an organization that can assist families affected by these diseases.  The Adeja Johnson Foundation is still in the early stages of development.  The group’s website has valuable resources to information on sickle-cell anemia as well as steps to take if a loved one is affected by the disease.

The Adeja Johnson Foundation needs everyone’s help.  The community needs more groups like this.  There is no excuse for why a disease like sickle-cell anemia remains unsolved.  People like Adeja and Bridgett serve as inspiration to the rest of us as people who face difficult circumstances but keep their steely resolve.  We can all learn a lesson from this family.  Keep Adeja and Bridgett in your prayers and hopefully we will one day find a cure.

*For more information on Sickle Cell Anemia, visit Sickle Cell Disease Association of America.

*Donate to the Adeja Johnson Foundation.

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One response to “Monday’s Best: Adeja Johnson Foundation

  1. hi, i have a daughter who is also ss, please can i know any update about how to reduce the pains,

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