Be on the lookout for this amazing sickle cell anemia blog!
Caregivers, friends, family, and patients of sickle cell, there is a new blog committed to raising awareness about sickle cell anemia, providing information and resources, and helping people with sickle cell live their most full and satisfying lives both economically and socially.
This informative blog is called Sickle Cell Society Blog and was started by the Sickle Cell Society. For those that aren’t in the loop, the Sickle Cell Society is a charity group that was founded in 1979. Its founders sought to create a society dedicated to raising awareness about sickle cell disorder. They were also concerned about the inadequate treatment for those with this disorder and committed themselves to changing the treatment and quality of life for survivors.
Sickle cell is a group of disorders that results in red blood cells being misshapen and breaking down. This type of disease is inherited or passed down from parents to children. Normal red blood cells have a steady supply of oxygen and work well; they take oxygen and carry it from the lungs to all tissues of the body.
In people with sickle cell anemia however, their hemoglobin, or a protein in red blood cells that carries oxygen through the body, becomes sickle hemoglobin.
Unlike normal hemoglobin in a person not affected with sickle cell disorder, sickle hemoglobin can form stiff rods in the red blood cells which change the red blood cells into a crescent, or sickle shape. These sickle-shaped cells are not flexible like regular cells and can stick to vessel walls which can result in a blockage and stop the flow of blood.
This, in turn, prevents oxygen from reaching nearby tissues. This lack of tissue oxygen can cause severe pain that comes on suddenly. These painful attacks can come without warning and result in a trip to the hospital for urgent treatment. Adults and adolescents may even suffer from chronic pain in between these painful crises.
Over a lifetime, sickle cell disorder can affect a person’s:
- spleen
- brain
- eyes
- lung
- liver
- kidneys
- heart
- penis
- joints
- bones
- skin
Furthermore, sickle cells only last about 10-20 days while regular cells last 90-120 days. As a result, a person with these disorders often has anemia as well, which means they have a lower amount of red blood cells than usual. This results in them having less energy.
Sickle cell disease is a lifelong disease. It can range in severity and the life expectancy in the US can range from 40-60 years. Advances in diagnosis and treatment continue to improve the lifespan outlook.
A well-matched donor can help a patient with sickle cell disorder have a hematopoietic stem cell transplant which so far is the only cure. Read more about sickle cell disorder here.
The Sickle Cell Society Blog describes their vision “to be the most successful sickle cell organization nationally with a wide network of well-informed, committed and active supporters working at local, national and international levels.” (Read here).
The blog is very clear about the structure of the organization. For example, they state plainly on the blog that their management committee has a small paid staff that provides special services, welfare opportunities, and varying forms of assistance for those with sickle cell disorder.
The blog is managed by 10 volunteers and they maintain transparency about their work and goals throughout the blog.
The web page has several features and sections. They have an “About” section where they cite the history of the Sickle Cell Society. They list their staff members for transparency as well.
The blog has volunteer options for interested people as well with many rewarding opportunities.
They also have a page with timely media and news stories about sickle cell disorder. The blog even has an option for readers to become a fundraiser to help the cause. They have a range for offering donations.
The society engages in a multitude of community opportunities and works including:
- Providing information about sickle cell disorder
- A helpline for those who are caregivers and those sick with the disorder
- Talks, training seminars, and informative literature
- Website and fundraising events
- And more!
This blog even takes it one step further and provides an opportunity for those interested to share their own personal story. This personal section is called “My Invisible Life.” This crucial element allows people to share their stories about living with sickle cell so that they can feel less invisible.
Sharing one’s story of living with sickle cell can be a very empowering experience. The page also offers the opportunity for readers to engage further with contributors by allowing a comment section underneath every story to reaffirm and motivate one another.
The blog does not stop there with opportunities for creativity and sharing. For the more creative, they have a “Poets space” section for those who prefer poetry to prose.
Overall, the blog is very aesthetically pleasing. It is easy to follow and navigate and is organized so that each section of the blog is easily accessible through tabs at the top of the page. The blog provides an easy and informative read!
Each reader can see the effort the society has put into making sure their work and goals are obvious and up to date. This blog offers a host of opportunities for its readers and supporters to become involved as well. The blog features a screen of recent activities so readers can see exactly what their volunteering, time, or donations are actually being used for.
Their resounding message is clear:
“By joining together, we can all turn a sickle into a smile!”
