Tuesday, January 15, 2013

Judy Gray Johnson Comments on Book Review

Judy Gray Johnson's comments on this web site's review of Living with Sickle Cell Disease were too long for the comment space. They clarify enough points to deserve a post of their own:

"Hi Priscilla,

 Sorry it took me so long to respond.  After over 50 years, I am still a Gate City girl…  The following is a few things that I wanted to clarify:

 Sickle Cell Disease is hereditary (passed from parent to child).  There are three common types of sickle cell disease:

-          HbSS (most severe form)

-          HbSC (milder form)

-          HbS beta Thalassemia

 I have the HbSC.  I inherited one sickle cell gene and one gene from an abnormal type of hemoglobin called C.

 …My family concluded that I was lazy, plain and simple…

 "Unfortunately, sickle cell disease is not cured by simply eliminating a food from the diet." The only known cure is a bone marrow or stem cell transplant.  This is a procedure that takes healthy stem cells from a donor and puts them into someone whose bone marrow is not working properly.  This is a very risky procedure and can have serious side effects, including death.  For the transplant to work, the bone marrow must be a close match.  Thus the need for more donors.

I am amazed that I have lived longer than many sickle cell disease patients despite the fact that I was not diagnosed until I was sixteen years old.  It is not known why some patients live longer than others.  We are individuals with varied health conditions that develop over time.  Some of us develop kidney problems, liver disease, avascular neurosis of the shoulders, hips, and knees; hypertension, eye disease; stroke; acute chest syndrome (ACS); hand-foot syndrome; infection; and crisis.

Because the pain is so intense, sicklers are given narcotics as a remedy for relieving us of the extreme pain at the moment.  Unfortunately, there is no other treatment that can give us immediate relief.  Most sicklers do not self medicate.  The problem is that many doctors don’t feel comfortable giving sicklers this medication because it is the same drugs used on the streets for illicit purposes.  When we go to the hospital during a crisis, some medical personnel think that we are coming in for a fix.  Fighting the pain and implications that sicklers are seeking drugs is inhumane.

This book was not written for other sicklers.  It was designed for everyone else in hopes that they would better understand our plight.  To look at us, we look normal.  You never know what the person you are standing next to is going through.

The General Assembly of the United Nations has declared that Sickle Cell disease is a worldwide public health problem.  Therefore, everyone needs to know about this disease.  It is possible to minimize the spreading of this disease.  It is important that everyone, regardless of ethnicity, be tested.

I think that for middle school students to read this would be too much for them to handle.  Especially their reading of what goes on in the hospitals.  However, I would recommend high school and above. 

This book should be required reading for all legislators since they have to pass laws about our health care.

I do agree with the other recommended persons on your list.

I did not understand the reference to Michigan.  Please explain.

Hope this clarifies a little bit.  Many thanks for reading my book and blogging on it.

Judy"

Here's the explanation she requested: As regular readers know, this web site has a contractual obligation to ban profanity. However, we allow certain words that have been censored, in the past, because they are not profanity. The "dam" that people don't give, or that things aren't worth, is a coin that became obsolete because making it cost more than the coin was worth. "Dang" comes from a French word for "crazy, stupid, demonstrating Object Perversity." And when people casually refer to "Hell," this web site assumes that they're talking about the town in Michigan.