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How Should We All Become Great Sickle Cell Disease Advocates?

 

Everyone can be an impactful sickle cell disease (SCD) advocate, including you. Remember, your child can pick up the sickle cell trait from your spouse even though you don’t have it. So, if more people become SCD advocates, awareness will increase and fewer children will be born with the condition. Also, the patients will get better care and support.

“How can  I be an advocate?”   

  1. SPEAK UP!

We are the voices of our communities. We; moms, dads, sisters, brothers, aunts, uncles and everyone else! Let’s not only wait for celebrities, state agents or doctors to advocate for us. The responsibility is ours to speak up and create enough impact. Begin by knowing the following:

  • What the disease is.
  • How it affects the body.
  • Your risk factors.
  1. GET TESTED

Many sickle cell trait carrier couples don’t even know they are carriers. Their parents never even told them they could potentially pass this genetic disorder onto their children. Parents, it begins with you! However, back then, most parents had no clue their children had the sickle cell trait (SCT).

Today in this millennium, you as a parent have no excuse because every child is screened at birth for the disease and the trait. Well, in developing countries, many kids are not screened.

Once you confirm that your baby has the trait, tell your children once they’re grown enough to understand! Educate them about all they should know about SCD.

  1. EDUCATE YOURSELF, THEN OTHERS

Be open about SCD and educate people about it. If you have ever witnessed someone with SCD experiencing a crisis, you will know how horrific and heartbreaking it is. Though sickle cell trait carriers don’t have the disease, having the trait exposes them to complications such as dehydration and not being able to participate in athletics at high altitudes.

  1. GIVE TO SICKLE CELL CHARITIES

You can financially or in some other way support Sickle Cell research needs. So, while speaking and teaching our loved ones and people everywhere we are, we can also prioritize SCD research funding to help doctors find better solutions.

We need more breakthroughs in addition to the non-universal bone marrow transplant in existence. Also, we need more options apart from Hydroxyurea for treatment of SCD patients. We need more medical advancement to suffer less crisis, less organ failure and less complications.

   4. KNOW YOUR GENOTYPE AND YOUR PARTNER’S GENOTYPE

Being informed about the genotype of our partner is the greatest primary SCD information we should all have about partners in our communities. This means that people who are trait carries should get a full understanding of the debilitating consequences that can occur if their offsprings have Sickle Cell Disease.

 WHAT MAKEs THIS DISEASE SO WEAKENING?

The disease changes the course of the patient’s life. Sickle cell pain crisis can really be truly devastating to the point of weakening the entire person and rendering them helpless for hours or even days.

Imagine your child screaming at the top of their lungs for about an hour or more because of excruciating pain. Imagine pumping morphine into this child’s little body and watching their veins pulsate. It’s indeed a horrifying picture.

Let’s become active SCD advocates everywhere we are!

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