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September is Sickle Cell Awareness Month

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Sickle Cell Disease Awareness 1

September is Sickle Cell Awareness Month, and I decided to show my support by educating my readers about this disease that affects so many in America, and abroad.  As an African American, I am well aware that sickle cell disease hits our community the hardest, and we have to stand in support of those we know and love who live with the symptoms that affect their well-being each and every day.  The purpose of this article is to provide a mini crash course on the most common sickle cell disease, sickle cell anemia, and all that comes along with having this condition.

What Is Sickle Cell Anemia?  A Brief Overview:

Sickle Cell Anemia is the most common form of Sickle Cell Disease (SCD), which is a condition where the body makes sickle-shaped (or crescent-shaped) red blood cells.  This shape is greatly different from that of normal red blood cells, which has more of a disc-shape that resembles that of a doughnut without the hole in the middle.  These disc-shaped cells move more easily and freely through your blood vessels than that of sickle-shaped red blood cells.  Sickle-shaped red blood cells are stiff and sticky, and due to their shape, they block the blood flow in the blood vessels that goes to the limbs and organs in the body.  When the blood flow is blocked by these sickle cells, this can cause extreme pain and organ damage for someone with sickle cell anemia.  In the body, these sickle cells tend to die in about 10 to 20 days.  Bone marrow in the body cannot replace these cells fast enough in order to make new ones.

What Causes Sickle Cell Anemia to Occur?:

Sickle cell anemia is a condition that a person is born with – it is inherited, and a life-long condition.  In order for someone to have sickle cell anemia, they must have received two genes of the sickle cell hemoglobin, one from each parent.  Individuals who received one sickle cell hemoglobin gene from one parent and a normal hemoglobin gene from the other are said to have the sickle cell trait.  The bodies of these individuals produce both normal and sickle hemoglobin cells.  They tend to have very few, if any, symptoms, and tend to lead healthy lives.

Having the sickle cell trait is very different from having actual sickle cell anemia – those with the trait do NOT have the disease; however, they can pass the sickle cell hemoglobin gene onto their future offspring, just like those with sickle cell anemia can.

Signs & Symptoms:

Those with sickle cell anemia can have a variety of symptoms that are quite diverse within this population.  Some individuals have mild symptoms, while others experience severe symptoms where hospitalization is necessary for treatment.

Though sickle cell anemia is an inherited medical condition, many infants with it show no signs of the disorder until they are a few months old.  Anemia and pain are connected to the most common signs of sickle cell anemia.

Anemia Complications & Sickle Cell Anemia

Listed below are signs and symptoms that are linked to the anemia complications experienced by those with the condition:

  • Fatigue (feeling tired or weary)
  • Shortness of breath
  • Dizziness
  • Headaches
  • Coldness in the hands and feet
  • Paler than normal skin or mucous membranes (the tissue that line the nose, mouth, and other organs and body cavities)
  • Jaundice (a yellowish color of the skin or whites of the eyes)

Pain & Sickle Cell Anemia

In regards to pain and sickle cell anemia, pain can occur suddenly in the body.  This spark in pain is called sickle cell crisis.  These crises tend to affect the bones, lungs, abdominal area, and joints.  Sickle cell crises pain can range from acute (short term duration) or chronic (long term duration), with acute being the most commonly seen.  Pain duration can last for hours or a week or longer.

Chronic pain located in the bones can last for weeks or months at a time.  This severe pain duration is not only physically taxing, but emotionally and mentally as well.  This kind of pain can greatly impact the daily living activities and interactions of someone with sickle cell anemia.

The one thing that the majority of everyone with sickle cell anemia has is the fact that almost all have and will experience some form of a sickle cell crisis in their lifetime.  These crises can occur an the individual once a year, several months within a year span, once a month, or frequently within a month timespan.  Recurring crises can have devastating effects on a person’s bones, kidneys, lungs, eyes, heart, and liver.  This kind of internal damage tend to happen in adults with sickle cell anemia than in children with the disease.

Other Health Complications & Conditions that Can Occur

  • Hand-Foot Syndrome
  • Splenic Crisis (pain relating to the spleen)
  • Risk of getting infections easily
  • Acute Chest Syndrome
  • Pulmonary Hypertension
  • Stroke
  • Vision problems
  • Priapism (a symptom that occurs in men; priapism is the persistent and painful erection of the penis)
  • Gallstones
  • Ulcers on the legs
  • Multiple organ failure

Who Is At Risk for Sickle Cell Anemia?:

Prevalence of Sickle Cell Anemia by Race & Ethnic Identities

  • Most common in individuals whose families or ancestors are from the following regions in the world:  Africa, South, or Central America; Caribbean islands, Mediterranean nations (such as Turkey, Greece, or Italy); India; and Saudi Arabia.

Prevalence of Sickle Cell Anemia in America – By the Numbers

  • An estimated 70,000 – 100,00 Americans, predominantly African Americans, have the disease.
  • Over 2 million Americans are carriers of the sickle cell trait.
  • In African Americans, the disease occurs in close to 1 out of every 500 births.
  • Sickle cell occurs in about 1 in 12 African Americans.
  • Those who are Latino(a) are also greatly affected; the disease occurs in 1 out of every 36,000 births in this subpopulation.

Treating Sickle Cell Anemia:

Peace, Love, Cure - Sickle Cell Disease 1At this time, there is no cure for sickle cell anemia.  Treatment currently available can target complications and provide relief to symptoms experienced during crisis occurrences.  The focal points of sickle cell anemia treatment are relieving pain; preventing infections, organ damage, and strokes; and controlling any complications that may transpire.  Though there is no widespread cure, blood and marrow stem cell transplants seem to be a very promising medical option for a small few who have the condition.  There is continuous research conducted for new treatment methods and a potential cure.

It goes without saying that someone with sickle cell anemia will need and seek regular medical attention and care.  There exists several clinics and physicians who specialize in providing healthcare to those with the condition.  One such specialist a person with sickle cell anemia may receive medical assistance from is a hematologist.  Hematologists specializes in treating individuals living with blood diseases or disorders.

To learn more about various treatment options for sickle cell anemia, click here to read the National Heart, Lung, and Blood Institute’s (NHLBI) webpage.

Living with Sickle Cell Anemia:  

Those with sickle cell anemia can lead productive, full lives with good medical care.  The life expectancy for those with sickle cell anemia has increased due to better treatment and healthcare options; those with the condition now live into middle age (forties and fifties), and older.

For those living with sickle cell anemia, the following are key points to remember in order to live a healthy life:

  • Adopt or maintain a healthy lifestyle.
  • Take steps to prevent and control complications.
  • Learn ways to cope with pain.

Living with Sickle Cell Anemia – Advocates Speak Out

I found this video on NHBLI’s website of Nicholas, a young person living with sickle cell anemia.  I thought that Nicholas’ story was imperative to understanding what life is like, and to put a “face” on the condition:

Living With and Managing Sickle Cell Disease (Nicholas):

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Final Thoughts:

Bold Lips for Sickle Cell (Sept. 2014)I felt compelled to write this article because I know many people who have sickle cell or are carriers of the trait.  The #BoldLipsForSickleCell campaign, established on social media by T-Boz, lead singer of the 90s R&B group TLC who lives with sickle cell disease, is one that I had to get behind by showing my support.  In order to improve the quality of life and treatment options for those living with sickle cell disease, awareness has to take place.  Taking a moment to snap a photograph of myself to show my solidarity in such awareness efforts is a small act, but the education and understanding this article and my support may have on someone’s life is anything but.  Show your support this month by visiting the websites of the Sickle Cell Disease Association of America (SCDAA) and SEASCA to learn more about what is being done in fighting sickle cell disease, and empowering the lives of those who live proudly with it.

RYV! Readers – A Call for Action:

Are you a person living with sickle cell disease?  What is life like for you as someone with this condition?  What are some of the misconceptions about sickle cell disease that you come across when you disclose your health status?  What are some of the challenges and strengths of having sickle cell disease?  How do you ramp your voice about sickle cell disease in your community?

What can we all do to raise more awareness and acceptance about sickle cell disease?  What are you planning to do to show your support?

Advocacy, whether minor or large efforts, matter – so do your part this month, readers!

(Featured headlining images:  Courtesy of Jessica Simien & Pinterest (via a pinning search).)

About Vilissa Thompson, LMSW

Vilissa is the Founder & CEO of Ramp Your Voice!, an organization she created to establish herself as a Disability Rights Consultant & Advocate. Ramp Your Voice! is a prime example of how macro-minded Vilissa truly is, and her determination to leave a giant "tire track mark" on the world.

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