World Sickle Cell Day 2019

June 19th is World Sickle Cell Day. According to the American Society of Hematology, Sickle Cell Disease (SCD) is the most common inherited blood disorder in the world. In fact, it is estimated that about 100,000 Americans have Sickle Cell Disease. In Maryland alone, The Maryland Department of Health states that 1 in every 256 African American children living in Maryland are born with the blood disorder.

In 2009 The UN Global General Assembly declared June 19th World Sickle Cell Day, this marks the 10th anniversary of that declaration. My husband and I found out that our daughter has sickle cell (ss) when she was 3 months old. For ten years I’ve been working to raise awareness about the disorder.

World Sickle Cell Day
My daughter who is living with Sickle Cell Disease

As a parent of a child with Sickle Cell Disease it is one of my goals to help other parents, families, and people worldwide understand SCD better. However, like with many diseases sickle cell seems to affect each patient a little differently. Although, many may have heard about sickle cell disease here are several facts they may not know:

Sickle Cell Facts

From the CDC Data and Statistics on Sickle Cell Disease in the United States (Source)

  1. 1 in 12 Black or African-American babies are born with sickle cell trait (SCT) in the United States. Two parents who carry the Sickle Cell Trait can pass the disease on to their children.
  2. Worldwide there are millions of people who suffer from Sickle Cell Disease. The mutation occurs more in African Americans (8 to 10 percent of African Americans have sickle cell trait), Hispanics, South Asians, Caucasians from southern Europe, and people from Middle Eastern countries.
  3. SCD affects approximately 100,000 Americans. However, the exact number still unknown because it wasn’t until recent years that each state-mandated newborn screenings for the disease.
  4. SCD occurs among about 1 out of every 365 Black or African-American births, and 1 out of 265 in the Maryland region.
  5. SCD occurs among about 1 out of every 16,300 Hispanic-American births.
  6. Annual costs of $10,000 for children and $30,000 for adults, which is about $1 million for patients who reach 45.

Moms N Charge Facebook Live

My Personal Story shared with Christine St. Vil from Moms N Charge

My overall goal is to help people gain awareness about the disease because before I had kids I would have loved to hear about Sickle Cell Disease because I didn’t even realize that I was at risk for having a child with the disease. It turns out that two parents who do not have SCD have a 25% chance of producing a child with SCD if both parents carry the Sickle Cell Trait.

Upcoming 2019 Events:

June 22 in Baltimore, MD – 6TH Annual Walk With The Stars Event

July 24-July 28 in Dallas, TX – 6th Annual Sickle Cell Patient and Family Educational Symposium (the Warriors Convention)

October 9-12 SCDAA’s 47th Annual National Convention is a four-day conference the second weekend in October (Early Registration Deadline: August 5, 2019) Renaissance Baltimore Harborplace Hotel, 202 E Pratt Street, Baltimore, MD 21202.

A Pioneer for Sickle Cell

How can you support those with SCD

  1. Donate blood
  2. Donate bone marrow/stem cells (get on the Be The Match Registry)
  3. Participate in research studies that apply to you and your family
  4. Start a conversation about Sickle Cell to help raise awareness about it
  5. Donate to the SCDAA
  6. Participate in Sickle Cell events like a walk-a-thon and other similar events

Share this Story

Facebook Comments

Check Also

How to Write an e-Book and Start Making Money

Have you been wanting to write an e-Book. ...

Ads


The St. Jude