What is Sickle Cell Disease and How to Support the Cause

Sickle Cell Disease is usually not in the main and very rarely discussed. On June 19, 2021, we celebrate World Sickle Cell Day under the theme “Shine the Light on Sickle Cell”. Sickle Cell Awareness Month is usually September. There are a few persons that I know who are living with this disease and I want to lend support through this blog post. We are going to start the conversation by sharing some facts and myths about the disease, and by sharing life through the eyes of a Sickler (the person living with the disease).

According to the Ministry of Health & Wellness (Jamaica) website, “One in every 150 persons has the sickle cell disease and 1 in every 10 persons has the trait,” and it is for this reason that the Ministry encourages early detection. Early detection saves lives – persons are able to live longer and healthier lives.

• Early Detection of Sickle Cell Saves Lives

What is Sickle Cell

Sickle cell disease (SCD) is a genetic red blood cell disorder. These red blood cells are abnormal. Instead of being round and smooth, they are usually crescent-shaped, hard, and sticky which causes them to get stuck in blood vessels and block blood flow. This blockage can cause damage to the spleen, kidneys, and liver. These cells tend not to last as long as normal red blood cells which leads to anemia (low blood count).

This disease is inherited and therefore it is a myth that it can be “caught”. Children whose parents have the disease (or traits of the disease) can inherit the condition.

In keeping with the early detection campaign, screening is done on pregnant women and babies to determine if a child has sickle cell disease or he/she carries the sickle cell trait. 

Disease Symptoms

Symptoms of SCD vary from mild to severe. Here are a few common symptoms:

• Bacterial infections
• Decreased haemoglobin (low blood count)
• Dizziness
• Enlarged spleen
• Feeling tired or weak
• Headache
• Leg ulcers
• Pain in the body that affects the bones, lungs, abdomen and joints
• Painful swelling and coldness of the hands and feet
• Paleness
• Passing out (fainting)
• Shortness of breath
• Yellowing eyes (jaundice)

Disease Treatment

It is important to note that the first few years of life is critical and it is for this reason early detection is encouraged. So now that we know the symptoms, what are some of the treatments available to persons with sickle cell disease?

• Vaccines to protect them against pneumonia, meningitis, and septicemia
• Pain management medication
• Antibiotics to help prevent infection
• Bone marrow transplants

Sickle Cell Disease Myths

There are a couple of myths that surround the disease. Here are a few:

Myth: Only black people get sickle cell disease.

Truth: Sickle cell occurs in all ages but it is most common in people of African and Asian descent.

Myth: Leg ulcers (sore on ankles) and yellow eyes (jaundice) are catching.

Truth: You cannot catch sickle cell disease, it is inherited.

Myth: Persons with sickle cell disease often die by age 30.

Truth: On average people live into their 40s and 50s; some are even known to live into their 90s.

Myth: SDC patients cannot hold a full-time job.

Truth: Many persons with the disease hold full-time jobs in different industries and they make valuable contributions to their organisations.

Visit the Ministry of Health & Wellness’ social media page and take a look at their “Sickle Cell Awareness Month: Myths_Truths Infographic”. It makes for an interesting read.

Coping Strategies for Persons with Sickle Cell Disease

40-Forwarders, if we know these coping strategies, we will be in a better position to support persons with the disease. Most importantly, we will know what to (and what not to) include in their CARE packages. 😉

Emotional, Psychological & Social Strategies

• Parents and guardians help your child to develop and maintain a healthy, positive, and confident self-image.
• It is important that parents advise the principal and teachers of your child(ren)’s school that they have the disease. Additionally, parents should be prepared to explain the nature of the disease and be ready to extend extra help (and work) to ensure their child(ren) is up-to-date with their class assignments and exams.
• Find a support group that you can share your concerns and challenges – www.sicklecellfoundationja.org
• Should depression set in, do not hesitate to seek counseling.
• Faith in God and having spiritual grounding.
• Reduce stress

Physical Strategies

• If you develop a fever or sudden paleness/weakness seek medical help immediately.
• Avoid temperature extremes and be sure to keep warm and dry.
• Eating a balanced diet that contains lots of fresh vegetables and fruits is important. However, if you are low on fresh produce, ensure Vitamin C, B-Complex, and Zinc supplements are included.
• Wash raw vegetables properly and cook meats and eggs properly.
• Stay hydrated – avoid dehydration at all costs. Throughout the day, drink water, vegetable and fruit juices, and coconut water. Stay away from those sugary beverages.
• Recommended sleep for Sicklers is 7 to 8 hours.
• Build muscles and improve circulation in your legs with low-impact exercises and by taking antioxidant-containing Omega-3 fatty acid supplements.
• Meditation and deep breathing exercises should be part of a Sickler’s daily routine.
• To avoid gall bladder problems avoid junk foods and greasy foods.
• Smoking and drinking alcohol is a no-no.

Other Strategies

• Wear proper shoes and protect ankles to prevent bruises and cuts.
• Regular checks and blood tests.

Living with Sickle Cell – Turning Pain into Purpose

Let me introduce you to honorary 40-Forward B.L.E.S.S. Clan board member, Morette Wright. One will never “guess” that Morette has sickle cell, you would have to “know” that she is living with the disease. Back in 1992, Morette decided to shine the light on sickle cell disease and she has not let up. Here is just a snapshot of Morette’s inspiring and legacy-worthy story.

Talk about turning pain into purpose! What the Sickle Cell Support Foundation of Jamaica (SCSFOJ) has achieved over the years is no small feat. Achievements include:

• Successful lobbying of the Ministry to re-start neo-natal screening resulted in screening beginning in 1993, and as at December 2015, most babies born in public hospitals are being screened.
• The addition of Sickle Cell Disease to the National Health Fund in June 2015.
• The publication and distribution (locally and throughout the Caribbean region) of an education brochure – Get the Facts, and a teacher’s guide – Teachers’ Guide to Sickle Cell Disease.

If you are living with the disease or caring for someone with the disease, I encourage you to get involved with the Foundation and its many activities.

The Ministry of Health & Wellness in conjunction with the Sickle Cell Unit (SCU), the Caribbean Institute for Health Research (CAIHR), the Sickle Cell Support Foundation of Jamaica, and Medical Marketing Company will be hosting a number of activities in this upcoming week to commemorate World Sickle Cell Day. 40-Forwarders let us help to spread the word and participate where we can!

40-Forwarders, as Morette says, “Knowledge is power.” We are now in the know about sickle cell disease – what it is, symptoms, treatments, coping strategies, and myths.  Armed with this knowledge, we are in a better position to lend our support. Let’s do our part to “shine the light on sickle cell” by being part of the discussion and lending a helping hand where we can. This is how the B.L.E.S.S. Clan rolls!

Are you living with sickle cell disease (SCD) or caring for someone with the disease, share some of your experiences in the Comments. Spread the awareness and keep the conversation going by SHARING this post.