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This Week In Sickle Cell News For The Week Of June 16th To The 22nd

6/22/2014

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By Sean Marshall
Biggest news of the week was that Thursday June 19th was world Sickle Cell day. The day itself managed to spread news about the disease on both global and local levels. Many different news agencies from across the web began spreading the word about the seriousness of sickle cell disease. 

Many of the articles posted on various news sites explained that “around 5% of the world’s population carry the sickle cell trait.” While other news agencies reported on the much more recent Nigerian statistics that "sickle cell anemia is about 20 per 1,000 births each year.” Despite attempts at news coverage this world Sickle Cell day proved that the media is willing to pay attention just not for very long or enough to fact check. 

The important thing is that the disease itself is getting coverage. Most if not all articles about Sickle Cell Awareness day mentioned the cause of the disease and why so many individuals misunderstand sickle cell disease. From lack of awareness to the fact that in Canada sickle cell is treated as a form of cancer. 

This is all great stuff but unfortunately many articles, videos and other news feeds barely touched on the suffering of those who have sickle cell disease. There 
were of course the exceptions like one particular article on Proplayerinsider.com in which readers are given the intricate details of the life of the an ex-pro athlete daughter who suffers from sickle cell. The article itself was moving as it explained the amount of pain children with sickle cell disease go through to the frustration of parents who don’t fully know how to help their child. The interesting turn the article takes is worth the read and in today"s media sometimes these perspectives are lost. 

If you would like to learn more there are links to the mentioned articles below. 

Link: 
http://www.cayman27.com.ky/2014/06/19/world-sickle-cell-day-raises-awareness-of-the-genetic-disease

Link: 
http://proplayerinsiders.com/nfl-player-team-news-features/world-sickle-cell-awareness-day-bobby-engram-foundation/

Other news this week includes a story out of Houston where a doctor has made breakthroughs in sickle cell disease treatment. 

It is explained in MyFoxHuoston.com’s article that a Dr. Modupe Idowu is working with the University of Texas Health Medical School on sickle cell research. The pair have discovered that individuals who have sickle cell disease “produce more substance which reduces the amount of oxygen in a person’s blood cells.” 

This is one of the factors that cause problems for those suffering from sickle cell disease. The article also went on to explain that “currently there is only one drug that is FDA approved for sickle cell disease but it comes with many side effects.” Ultimately the drug seems to be a double edged sword. Helping relive pain 
and inflammation but causing other problems later in life. 

There was also mention of a patient of Dr. Modupe and her struggle over sickle cell but unfortunately there was little mention of how well the drug worked. There was mention that it helps with her pain tolerance but not much more after that. Also the drug in question was not named. However taking the good with the bad any advancement in the treatment of sickle cell disease is always a step in the right direction. 

Again links to the full articles can be found below the summaries. 

Link: 
http://www.myfoxhouston.com/story/25833368/houston-doctors-discover-breakthrough-with-sickle-cell-diseaseLastly 

If you have any concerns, questions, comments or suggestions feel free to email us at: thesickleinme@gmail.com
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