(RxWiki News) Sickle cell disease is a public health concern in the US and worldwide. There is no easy cure, but patients can live normal and productive lives with prompt detection and the right treatment.
In August 1983, President Reagan approved the resolution to designate September as National Sickle Cell Anemia Awareness Month.
Now, every September as part of National Sickle Cell Awareness Month, the efforts from different health organizations across the US are brought together to educate the public about this disease by talking about who is at major risk, where to seek help and how we can get involved in the fight against it.
Sickle cell disease can be life-threatening. For this reason, it's important to learn how to assist patients who live with this disease. Awareness of the disease, as well as its effects, are the first steps towards prevention and better life quality in patients.
Learn more about sickle cell disease, and join one of the walks or activities that are being organized in your area this month to help raise awareness.
"Find local support groups and resources for sickle cell disease."
Sickle cell disease is a condition in which some of the red blood cells have a sickle or half-moon shape instead of being rounded.
But it is not just about shape; these sickle cells have a different set of features than normal, healthy cells. For example, they are less flexible and more fragile.
The main problem with sickle cells is that they get stuck in small blood vessels, causing intense pain and other serious complications, including blood clots in the brain, a low number of red blood cells (anemia), infections and damage to the body's organs.
The Centers for Disease Control and Prevention (CDC) estimates that nearly 100,000 people in the US live with sickle cell disease.
Sickle cell disease is particularly common in those with lineage from Africa, Saudi Arabia, India, South or Central America, Caribbean islands, Turkey, Greece and Italy. In the US, sickle cell disease occurs in one of every 500 African-American births and one of every 36,000 Hispanic-American births.
Sometimes, people may carry a sickle cell gene even though they don’t have sickle cell disease. This is called having the sickle cell trait.
Sickle cell trait is usually benign, but sometimes the people with it can experience some complications. High altitudes, dehydration, and increased atmospheric pressure (which may be felt when scuba diving, for example) can cause red cells to become sickled. This can cause severe pain as well as muscle injury, reduced blood flow to the spleen, and increased pressure in the eye following eye injuries.
For example, if both parents have the sickle cell trait, there is a 25 percent probability that their baby will have sickle cell disease. But if only one parent has the sickle cell trait, there is no risk of acquiring the disease for their children. If a parent has sickle cell disease, the risk is higher.
Knowing whether or not someone carries a sickle cell gene is important when planning a family. Non-directive (unobtrusive) counseling is available at your local sickle cell organization or health provider.
The American Society of Hematology reports that 3 million Americans have the sickle cell trait. A blood test can easily detect whether someone has sickle cell disease or carries the sickle cell trait.
In the US, newborns are tested for sickle cell as part of their health screening. This is important because, if the baby has sickle cell disease, special care can be provided immediately.
The CDC recommends the following steps for patients to help avoid complications of sickle cell disease:
- Find a good medical provider
- Get regular checkups
- Avoid infections
- Learn healthy habits
- Get support
- Look for clinical trials
The National Collegiate Athletic Association and National Athletes Trainer's Association recommend screening athletes for sickle cell trait and the use of an alternative training regimen in athletes with the trait.
An article published in 1994 in The New England Journal of Medicine concluded that early mortality (death) was highest among patients whose disease was highly symptomatic. In that study, the life expectancy of patients with sickle cell disease was around 40 years of age. Nowadays, life expectancy is increasing with better treatments and more public awareness.
A recent article published in the journal Pediatrics reported that the use of the medication hydroxyurea (brand names Droxia and Hydrea) lowered the annual medical cost and hospitalization rates by 20 percent.
More research on sickle cell disease is ongoing, with the main focus in the areas of genetics, stem cells and pain management.
The Sickle Cell Disease Association of America — one of the largest non-profit associations in the US — was created 41 years ago to address the issues related to sickle cell disease and to advocate for the people who live with this disease. It is formed by nearly 60 organizations and affiliates from different communities. They work in collaboration with medical facilities and federal agencies to take care of the needs of patients.
Some of the resources that the Sickle Cell Disease Association of America provides to patients with the disease and to people who want to get involved in the fight againts sickle cell disease include the following:
- Technical training
- Research funding
- Academic meetings
- Educational material
- Fundraising events
- Community programs
- Health campaigns
- Information about current clinical trials
- Genetic counseling
- Working groups
Visit the website of the Sickle Cell Disease Association of America and find organization members from your state. Take part in the events that are being planned in your community during this month and all year long, and help spread the word.