nothin Ring The Bell For Sickle Cell | New Haven Independent

Ring The Bell For Sickle Cell

Rawlings & Tinney

This article originaly appeared in the Inner-City News, where Babz Rawls-Ivy is the managing editor.

James Rawlings is on a serious mission … to raise awareness of Sickle Cell Disease. 

Yes, Sickle Cell Disease is still very much with us.

Jim is the board chair of the Sickle Cell Disease Association of America, Southern CT, Inc. He sat down to talk about the disease.

When he first became aware of this disease as a high-ranking administrator of Yale New Haven Hospital, he began noticing patients staying long periods of time after being admitted … some staying as much as 100 days per crisis admittance.

Everything is code driven,” he said, so he started paying attention to the codes of certain patients … African-Americans. He did some digging and learned of the Sickle Cell Disease. He was interested in this issue, but his time and attention were focused heavily on the HIV/AIDS epidemic, as with most of the medical professions in those days.

Fast forward to today. Now retired and more recently retired from serving as Greater New Haven NAACP president, he has come full circle on an issue that still needs attention and awareness raising in our communities and around the world for that matter.

In walked Gary Tinney, firefighter, and community activist. On first glance the connection between these two powerful men escapes you. Yes, they are friends and have mutual respect for each other, but upon closer inspection, the link is Sickle Cell Disease.

You see, Gary in his capacity as firefighter, learned of this disease on medical calls; 80 percent of the calls that come into the fire department are medical. So often he would arrive to a home with someone in full-blown crisis. After a while he began to notice how prevalent it was, he got to know the folks who would need assistance.

This has been going on for so long that he has gotten to know folks with sickle cell disease; most he watched as children grow into adults. Gary knew firefighters needed some awareness about how to deal with understanding Sickle Cell Disease, especially around issues of pain management. So of course he connected with Jim Rawlings and become a board member of SCDAA Southern CT, Inc. Together they began working to garner support for this cause.

With the blessing and support of Mayor Toni Harp, Chief Allyn Wright, members of Local 825, Local 825 President James Kottage, National President James Hill, the New Haven Fire Department will be out collecting funds with the famous boot on Sept. 19, 2014,. You might have seen them doing this successfully for muscular dystrophy over the years. This historic support will help raise awareness and much needed money for research and outreach. This is the first campaign of its kind in the Northeast.

This historic partnership of New Haven Firefighters, and the local Sickle Cell Disease chapter to target and raise awareness in a specific community in which they serve is extraordinary and pivotal in the fight to find a cure for Sickle Cell Disease.

Jim Rawlings’ passion coupled with Garry Tinney’ssense of compassion for the folks he sees on a regular basis brings this issue to the forefront of our communities in a very needed way. For too long Sickle Cell Disease has taken a back seat to so many other medical issues plaguing our communities. The time is now to Ring The Bell For Sickle Cell”

What is Sickle Cell Disease (SCD)?
Sickle cell disease is an inherited blood disorder that affects 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 each that part of the body. Tissue that does not receive a normal blood flow eventually becomes damaged. This is what causes the complications of sickle cell disease. There is currently no universal cure for sickle cell disease.

Hemoglobin is the main substance of the red blood cell. It helps red blood cells carry oxygen from the air in our lungs to all parts of the body. Normal red blood cells contain hemoglobin A. Hemoglobin S and hemoglobin C are abnormal types of hemoglobin. Normal red blood cells are soft and round and can squeeze through tiny blood tubes (vessels). Normally, red blood cells live for about 120 days before new ones replace them.
People with sickle cell conditions make a different form of hemoglobin A called hemoglobin S (S stands for sickle). Red blood cells containing mostly hemoglobin S do not live as long as normal red blood cells (normally about 16 days). They also become stiff, distorted in shape and have difficulty passing through the body’s 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 a normal blood flow eventually becomes damaged. This is what causes the complications of sickle cell disease.

Types of Sickle Cell Disease

There are several types of sickle cell disease. The most common are: Sickle Cell Anemia (SS), Sickle-Hemoglobin C Disease (SC)
Sickle Beta-Plus Thalassemia and Sickle Beta-Zero Thalassemia.

What Is Sickle Cell Trait?
Sickle Cell trait (AS) is an inherited condition in which both hemoglobin A and S are produced in the red blood cells, always more A than S. Sickle cell trait is not a type of sickle cell disease. People with sickle cell trait are generally healthy.

Inheritance
Sickle cell conditions are inherited from parents in much the same way as blood type, hair color and texture, eye color and other physical traits. The types of hemoglobin a person makes in the red blood cells depend upon what hemoglobin genes the person inherits from his or her parents. Like most genes, hemoglobin genes are inherited in two sets, ¦one from each parent.

Examples:

If one parent has Sickle Cell Anemia and the other is Normal, all of the children will have sickle cell trait.

If one parent has Sickle Cell Anemia and the other has Sickle Cell Trait, there is a 50% chance (or 1 out of 2) of having a baby with either sickle cell disease or sickle cell trait with each pregnancy.
When both parents have Sickle Cell Trait, they have a 25% chance (1 of 4) of having a baby with sickle cell disease with each pregnancy.

How will I know if I have the Trait?
SIMPLE BLOOD TEST followed by a laboratory technique called Hemoglobin Electrophoresis will determine the type of hemoglobin you have. When you pass an electric charge through a solution of hemoglobin, distinct hemoglobins move different distances, depending on their composition. This technique differentiates between normal hemoglobin (A), Sickle hemoglobin (S), and other different kinds of hemoglobin (such as C, D, E, etc.).
For more information on Sickle Cell Disease click here.

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