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July 12, 2014, 8:40 pm

Survivor educates others with sickle cell book

For almost 70 years, Judy Gray Johnson has been coping with sickle cell disease.

Now she’s shared her experiences in her book, “Living with Sickle Cell Disease – The Struggle to Survive.”

Co-authored by Leroy Williams Jr., a newspaper journalist, the book chronicles the retired educator’s years of struggling with pain caused by a disease that affects millions of people around the world.

Sickle cell disease refers to a group of inherited red blood cell disorders. In someone who has SCD, their red blood cells become hard and sticky and look like a C-shaped farm tool called a sickle. When these sickle cells travel through small blood vessels, they get stuck and clog the blood flow which leads to pain and problems such as infection, acute chest syndrome and stroke.

The Centers for Disease Control and Prevention says SCD affects 90,000 to 100,000 Americans. The CDC estimates that the disease occurs in about one of every 500 African-American births and in one out of every 36,000 Hispanic births. The disease is inherited when a child receives two sickle cell genes — one from each parent.

SCD is diagnosed with a simple blood test. The disease is usually found at birth during newborn screening tests at the hospital.

Johnson wrote “Living with Sickle Cell Disease” because she wanted general public to have a better understanding of the condition.

“The book is not designed for sickle cell patients. It’s designed for everyone else,” said Johnson, who is a native of Gate City, Va.

“I felt like I had to write this book because there are so many people who are suffering and people generally don’t understand the degree to which they are suffering.”

Johnson says that the general public doesn’t understand how people who are impacted by sickle cell disease are regarded by some medical professionals.

“We’re met with not only having to survive the pain and suffering that we are going through, but also the image of a medical professional looking at us as if we are drug seekers. We’re not treated with the degree of respect that we should (be),” said Johnson who worked in public education for almost 40 years.

“People have to understand that this is a disease that we have no control over. We were born this way, and we have every right to be treated with dignity and respect. There are too many doctors that don’t feel comfortable in treating sickle cell patients. They don’t know how to deal with pain. Many doctors do not feel comfortable in treating people dealing with pain management — that is the biggest problem right there.”

Johnson says the pain crises that people with sickle cell face are often treated with medications such as morphine and oxytocin — drugs that are often used for illicit purposes on the street market.

In her book, Johnson recalls experiences of being treated like a “second class citizen” when seeking treatment at emergency rooms after experiencing a pain crisis. Johnson, who was diagnosed with the disease at age 16, says she’s been demeaned and insulted by medical professionals while seeking emergency room treatment.

Johnson said the United States has not acknowledged that it has a problem treating sickle cell patients in the emergency room setting.

“The average emergency room is great at treating traumatic injuries resulting from gunshot wounds, stab wounds and car accidents, and they are also good at providing care for heart attacks and strokes — but when it comes to sickle cell and anything dealing with pain — this is where they seem to be stopped in their tracks,” said Williams.

In addition to dealing with medical professionals who lacked compassion, Johnson has coped with employers who did not understand the dynamics of SCD. The disease often left Johnson feeling fatigued and she experienced pain crises on the job which led to hospitalizations.

Johnson is in the process of working on a training manual to help educate school teachers and administrators about SCD.

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Contact Staff Writer Ayana Jones at (215) 893-5747 or This email address is being protected from spambots. You need JavaScript enabled to view it. .