Thursday, June 20, 2013

10 things You Need to Know About Sickle Cell


Yesterday was World Sickle Cell Day. A day set aside to raise Sickle cell awareness worldwide.

Here are 10 things you need to know about Sickle cell:

1. Genetic testing is important to know your genotype. Saying “I’ve never been sick” doesn’t make it impossible that you have the Sickle cell gene. People have found out they had Sickle cell disease in their 20s/30s.

2. Sickle Cell disease does not only occur among African Americans or in African countries like Nigeria, Ghana and Sierra Leone. It is common in Hispanics and in people from Greece, and Middle East countries like Bahrain, Saudi Arabia.

3. There are variations in the genotype. An individual can have Sickle cell disease and have the genotype SS, SC or Sβ thalassemia.

4. The different variants can affect the severity of pain and longevity of the individual with Sickle Cell.
The Cooperative Study of Sickle Cell Disease (1991) focused on the natural history of 3,578 individuals with SCD age newborn to 66 years, and found that the average pain rate in SCD-SS was twice that of individuals with SCD-SC, while the median age** of death was 42 - 48 years for individuals with SCD-SS and 60-68 years for individuals with SCD-SC.

**Note that the ages are median meaning middle in statistics, not average. Hence earlier and older deaths do occur across the range.
Ernestine Diamond, 86, is the oldest American known to be living with SCD
5. These are the faces of sickle cell in the millennium below. Kindly delete those images of yellow eyed, pot bellied, sickly looking under achievers you have been told about.

T-Boz of TLC
Tosin Coker, Author
Akimie, Runway model
Having sickle cell does not mean you cannot be what you want to be (maybe not an athlete), but there are so many career options available for you just like everyone else. In the pictures above, Akimie is a model, Tosin is an Author, T-boz of TLC a singer, Larenz Tate etc

6. Scared about love and relationships? Don’t be. People with SCD have found love just like everyone else, married had babies and are living normal everyday lives. I promise you, there are men and women out there who see you beyond your genes.

7. Self care activities are critical to decrease health care costs as well as improve the health status and quality of life for persons living with SCD. This includes drinking lots of water and eating a balanced diet, taking your folic acid.

8. Self care activities also includes listening to your body and knowing your limits. “Your body is going to tell you before you get sick. Your body is going to tell you that it’s tired. Listen to it”. Great tip for everyone too!!

9. Arm yourself with knowledge about your condition. Read, read, read some more - about treatments available, about reproductive choices. Ask questions of your doctors. Join support forums. Don’t isolate yourself.

10. There’s a lot of physical pain and psycho-social problems associated with Sickle cell disease, the former comes from the disease while most of the psychological pain and depression comes from the attitude of the society. 
Dear person with SCD, Surround yourself with positive, respecting and supportive friends and family.
Dear person without SCD, stop being shortsighted. See the person behind the disease.

Sickle cell disease can only limit you if you let it. Choose to be a Warrior not a victim of Sickle cell disease. 

Sources
Sickle Cell Warriors 
Celebrities with SCD
 

6 comments:

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  2. Hope you don't mind if I repost and share with my friends.

    ReplyDelete
  3. My late friend was SC. I never knew it existed till i met her. Thanks for sharing. I know people who are living well. My masters supervisor is SS too and she's amazing

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  4. Waw this is good thank you for sharing this post.

    ReplyDelete
  5. Chai Ginnie...I can call you Ginnie right? *grin* I totally love this and I'm sharing asap. Keep em coming

    ReplyDelete

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