Sickle Cell Disease Misconceptions and Facts you Need to Know

Introduction 

Sickle cell disease misconception

In the 1970s, the median life expectancy for a person with sickle cell disease was 10 years of age. Now, more than 95% of newborns with sickle cell disease in the United States and 60-65% in Nigeria will live to be adults. 

Fact Check 

1. If I have sickle cell trait, that means my baby will have sickle cell disease.

This is false. Sickle cell disease is caused by an abnormal hemoglobin. If you inherit the sickle gene with another sickle gene, then you have sickle cell disease. However, if you inherit just the sickle gene from one parent with normal hemoglobin from the other parent, you just have sickle cell trait. If only one is a sickle gene and the other is another abnormal gene, a person can have hemoglobin SC disease, sickle beta thalassemia, and many other varieties. These are all under the umbrella of sickle cell disease. 

Fact Check

2. People with sickle cell disease don't live past childhood.

This is false. In the 1970s, the median life expectancy for a person with sickle cell disease was 10 years of age. Now, more than 95% of newborns with sickle cell disease in the United States will live to be adults. 

And while the claim may have been the case in the past and in some developing countries like Nigeria, there have been great strides in treatment and management that have led to better life expectancy. 

Fact Check

3. People with sickle cell disease always look tired and sickly. 

This is false. The outward appearance of someone with sickle cell disease can be quite normal and is often normal. Fatigue may be a factor in the disease, but looking tired or sickly is not an automatic feature in a person with sickle cell disease. Although some sicklers have characteristics look, like they tend to have long slender extremities, prominent upper jaw, box like head and so on.

Fact Check

4. People with sickle cell disease are protected from malaria. 

This is false. People with sickle cell trait having only one sickle cell gene do benefit from added protection against severe forms of malaria. However, patients who have sickle cell disease do not benefit from this protection and can actually have more severe complications of malaria. 

Fact Check. 

5. Only Black people get sickle cell disease. 

This is false. Actually, sickle cell disease can affect almost anyone, including Caucasians. The disease affects millions worldwide. However, it is predominantly in people with ancestors from Africa. The sickle cell gene arose three distinct times in Africa and once in the Arab Indian Peninsula. 

Therefore, sickle cell disease is seen in people whose families are from the Middle East, India, Latin America, and the Mediterranean countries. It has also been seen in American Indians. 

Fact Check

6. Sickle cell disease is commonly used as an excuse to receive pain medication. 

This is true. Sickle cell disease causes excruciating pain episodes that require medication. Pain medication is essential for the treatment of sickle cell pain episodes. When pain control is established early, it's associated with shorter stays in the hospital. 

Fact Check

7. The only complication of sickle cell disease is pain. 

This is false. There is more to sickle cell disease than just pain. There are very serious complications that can be associated with sickle cell disease, such as kidney failure, heart failure, strokes, infections, blood clots, anemia, and acute chest syndrome, just to name a few. So the severity of sickle cell disease should not be underestimated. 

Fact Check

8. Sickle cell disease is not a contagious blood-borne disease. 

This is true. It is not possible to get infected by the blood of someone who has sickle cell disease. Sickle cell disease is not contagious and you cannot catch sickle cell disease. Remember, people only have sickle cell disease if they inherit abnormal hemoglobin genes from their parents. 

Fact Check

9. There's a cure for sickle cell disease. 

This is true. Well, for a few patients there's a procedure available that could provide a cure and that is called a bone marrow transplant.

It's an option for a minority of patients and it's an intricate process that involves finding a match. The procedure itself is also quite complicated and should not be underestimated. If you're interested, talk to your doctor and see if you're a good candidate. 

Closing Thought 

We've come a long way from the 1970s when the average life expectancy of individuals with sickle cell disease was 10 years, to now when the median life expectancy is 21 years in Nigeria and up to about 58 years in some developed countries. 

Other therapies on the horizon include gene therapy and CRISPR, including multiple other compounds that are currently in clinical trials for sickle cell disease. Thanks for joining me today. 

References

1. Omotade OO, Kayode CM, Falade SL, Ikpeme S, Adeyemo AA, Akinkugbe FM. Routine screening for sickle cell haemoglobinopathy by electrophoresis in an infant welfare clinic. West Afr J Med. 1998 Apr-Jun;17(2):91-4. PMID: 9715113.

2. Oluwasola OA, Fawole OI, Otegbayo AJ, Ogun GO, Adebamowo CA, Bamigboye AE. The autopsy: knowledge, attitude, and perceptions of doctors and relatives of the deceased. Arch Pathol Lab Med. 2009 Jan;133(1):78-82. doi: 10.5858/133.1.78. PMID: 19123741.

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