Raising awareness of sickle cell anemia challenging

Sickle cell anemia, an illness that can unexpectedly take your last breath away, affects millions of people, regardless to their race, ethnic background, wealth and living conditions.
“It’s always a challenge for us to get the awareness of sickle cell out to the public,” said Lori Burgess, executive director of Baton Rouge’s Sickle Cell Anemia Foundation. “So many illnesses and diseases always receive attention by the public, but it is hard for people to pay attention to this disease. I’m not sure whether it is because people feel that it isn’t a “top disease” per say or what, but sickle cell anemia is a serious condition that everyone needs to take concern with.”
According to the National Heart, Lung, and Blood Institute website, sickle cell anemia is a serious disease in which the body makes sickle-shaped red blood cells. As normal red blood cells are disc-shaped and move easily through blood vessels, they contain protein hemoglobin. This iron-rich protein gives blood its red color and carries oxygen from the lungs to the rest of the body. These cells last about 120 days in the bloodstream and then die.
However, sickle cells contain abnormal hemoglobin that causes the cells to have a sickle shape and don’t move easily through blood vessels. These cells may also cause clumps that can block blood flow in the blood vessels that lead to the limbs and organs. These blockages can cause pain, serious infections, and organ damage. As opposed to normal blood cells, these cells normally live from 10 to 20 days and then die.
“Some patients with sickle cell anemia are fortunate, having no major problems while some have several crisis.” Burgess explained.
When these patients have crisis, they are hospitalized until the crisis is over. A crisis can happen at any time, giving no warning signs. These crisis often affect the bones, lungs, abdomen, and joints. Some people may have at least one crisis per year, while others have 15 crisis or more. Other signs include shortness of breath, coldness in the hands and feet, chest pains, pale skin, headaches, and dizziness.
“Sickle cell anemia is not like a disease like HIV or STDs. This disease is inherited, every person that is diagnosed with the disease was born with it.” Said Burgess.
Unlike illnesses such as the flu or chicken pox, sickle cell anemia is a disease that is past through the parents. If each parent has a trait of sickle cell, then the child or children of the parents will have sickle cell.
“It’s something beyond our control. This is why it is important that people are tested for the trait before children are conceived.” Burgess explained.
It is common for children to be diagnosed with the disease at an early age, but the disease is normally not diagnosed until infants are four moths old or older. When children are diagnosed with the disease, they are able to receive burial insurance, but in many cases, they cannot receive medical insurance. If they do receive medical insurance, once the make 18 years old, they are dropped off the insurance because of the disease.
“At one point and time, people were dying as children with this disease. Today, people with the disease are living to be in their 20s and 30s. They are normal people. They have their own lives, jobs and families. They are normal, just like me and you, it’s just that they have this chronic disease.” Burgess said.
“Many people with have this disease are not comfortable with acknowledging it.” Burgess said. “I know so many people, even some with master degrees and doctoral degrees who are ‘quiet’ about their situation. I can recall when one person actually said that they were raised to be quiet about it because this disease only happened to “poor black folk” and that is far from being true.”
“So many people feel that they have been cursed with the disease, so they decide to keep it among themselves. But it is not a contagious disease and it is nothing to be ashamed of.  We need to keep informing others about so we can find a cure for it.”
The Baton Rouge Sickle Cell Anemia Foundation is working hard to educate people and get people more involved with helping find a cure for thee dreadful disease. The foundation sees over 475 clients, which are from 11 surrounding parishes. The parishes include Ascension, Assumption, East Baton Rouge, East Feliciana, Iberville, Livingston, Pointe Coupee, St. Helena, Tangipahoa, West Baton Rouge and West Feliciana
“We can’t do this alone.” Burgess expressed. She explained how the foundation hosts several events for the patients, especially the children and for the public to learn more about the disease.
“We have annual activities and events for the patients. Many organizations partner with us and assist us with these activities, for example, organizations partner with us and assists with making food baskets for Christmas.”
“But we do need volunteers for our events.” Burgess explained. “Whether it is a monetary donation or if someone volunteers their time, it is greatly appreciated.”
In partnership with Southern, the foundation will host the nationwide Empowerment Day at the J.K. Haynes Nursing School on October 22, 2009 from 1-6 p.m.. A walk will begin at 1 p.m. where teams or individuals can walk in support of sickle cell anemia. Registration will take place at noon. Health vendors, health screenings, along with a Sickle Cell Town Hall Meeting will take place after the march. Presenters, local entertainment and a special national recording artist will perform at the meeting. Free testing to see if you have the sickle trait will also be available. For more information, contact Lorri Burgess at 225-346-8434.