100 Years Later

December 5, 2010

General

In 1910, Walter Clement Noel, a dental student from the West Indies, came into Dr. James B. Herrick’s office complaining of shortness of breath, pneumonia and severe pain. When Dr. Herrick examined his blood cells, he discovered they were not all round like normal red blood cells. They were shaped like the sickle farming tool. And, so he coined the term, ‘sickle cells.’

In 1927, Dr. Hahn and Dr. Gillespie showed that the sickling of red blood cells was related to low oxygen. Right now, we know that it is also attributed to stress, exertion and dehydration.

A bone marrow transplant can cure sickle-cell disease but it is very dangerous and very costly. So, we treat the systems of pain and anemia (low blood makes you feel tired all the time) with narcotics, folic acid and blood transfusions.

Madison has a blood transfusion every three weeks and it has been explained to me that she will have these transfusions, as needed for the rest of her life. That’s the best doctors can do. That’s the best they have come up with. Blood transfusions cause iron overload which can kill her but her doctors promised they would watch out for iron overload and stop the transfusions when her iron levels get too high. That, I guess, should give me peace of mind.

I’ve decided that I need to do more to find a more permanent solution and cure for sickle-cell. 100 hundred years is long enough to have found a cure. We need more money, attention and a bigger sense of urgency on the part of those affected by the disease as well as the medical community.

I’m disturbed by the fact that I have to explain to doctors in the emergency room what sickle-cell is and how to treat my child. Some young doctors have never even heard of sickle-cell. This is unacceptable.

The Madison Holland Foundation was formed to raise money for research organizations trying to find a cure and improve the lives of adults and children living with sickle-cell.

Life expectancy has increased to 40 years for adults living with sickle-cell. Every patient’s experience is different though. The lucky ones live in areas where the medical community is familiar. And, the unlucky ones live in areas where they are accused of being depressed, attention seeking or drug attacks looking for a fix. Without education and advocates these patients suffer pain and indignities that are avoidable. Adult patients wait in emergency rooms for help that slowly and apprehensively comes. Children wait while their parents scream and insist on immediate attention and pain relief.

I want to change what I can. I want to help fund the research for sickle-cell and help educate the community– medical and other wise. I’ve never done anything like this before.  Still, I’ve never been this passionate about anything before. I want my daughter to have a long, happy and prosperous life.

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2 Comments on “100 Years Later”

  1. SJ Jones Says:

    I love what your doing, Sis. Whatever you can do to increase awareness and push toward finding a cure, I support whole-heartedly. Of course, I share your interest in providing a wonderful and healthy life for my Maddy. For that reason alone, I support you. I also have an additional interest in it. You know I’m a bit of a geek – all into the latest technology. Well, I’m really interested in the latest advances in medical technology and how they’re being used to find new approaches to curing this disease and others. I’ve been planning to post a little something about sickle cell on my f/b page for a long time. Since I don’t like half-doing things and this is the kind of important subject that I think deserves the best effort that I can give, I haven’t posted it yet. I have a lot of information that I’d like to share about it. I’ll be posting it soon. Anyway, it’s great to see you sharing the knowledge that you have about it. The page looks great too. I’ll be watching and available to do what I can to help.

    Love,
    Your Brother,
    Shannon

    Reply

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