By Sean Marshall
It was reported by the Daily Post this week that Nigerians have the largest cases of sickle cell anemia. A direct quote from the article best sums up the shocking discovery “Nigeria has the largest population of people with Sickle Cell Disease in the world, with over 150,000 babies born with the serious condition every year, researches have shown.” It was also explained that estimates put only about five percent of children with sickle cell disease live past the age of 10 in Nigeria. This statistic was compared to the 96 percent that live in the United Kingdom.
The article mainly focused on spreading the awareness of the high numbers of sickle cell anemia cases in Nigeria beyond that there was nothing new to be found.
The original article can be found here: http://dailypost.ng/2015/06/21/sickle-cell-disease-nigeria-has-largest-cases-in-the-world-research/
The Times of India reported that Minister for Social Justice Rajkumar Badole of Nagpur assured activists that “ All the problems of the poor people in the state suffering from sickle cell disease (SCD) will be solved within the next three months.”The first step in the master plan is awareness in a quote from SCSI president Sampat Rameteke he said “awareness about SCD needs to be made among the 150-odd MLAs whose constituencies are home to most patients of the disease," he also asked “every MLA to provide them a list of problems that institutions like primary health centers, rural hospitals, sub district hospitals are facing.”
They hope that if they spread awareness and then find out the difficulties hospitals are facing when dealing with sickle cell disease they may be able to root out any issues in the future. The last step they reveled is looking into families with the genetic blood disorder in order to educated them before they have children. The article mentioned that more on Rajkumar Badole promise will come in the future so we will have to be patient and optometrist.
If you want to read more the article can be found here: http://timesofindia.indiatimes.com/city/nagpur/Problems-of-sickle-cell-disease-patients-will-be-solved-in-next-three-months-Rajkumar-Badole/articleshow/47802742.cms
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By Sean Marshall
June 17th was national sickle cell day. It was an interesting media event on Thursday. Many news organizations like CTV news, voice of America news and other North American news agencies took notice of sickle cell anemia. Many articles explained what sickle cell anemia is who is affected and the types of ways people often cope and survive. It should be mentioned that most sites mentioned that there was no cure and did outline the extreme difficulties that sickle cell sufferers go through. Unfortunately most North American news coverage was light just barley scratching the surface compared to countries whose populace are more affected by sickle cell disease.
There were a few humanizing moments at CTV there was an article focused on the daily life of a young woman who sufferers from sickle cell anemia and it really showed what the day is all about. Spreading awareness of what sickle cell has done to everyday people and how it needs to stop now.
In other more international news business Ghana.com published an article about Ghana National Petroleum Corporation has donated 500,000 dollars to the Sickle Cell foundation of Ghana this week. It was explained by Professor Kwaku Ohene-Frimpong, the president of the Sickle Cell foundation of Ghana what would happen with the donation. In the article it was explained that he said “part of the money would be used to assist patients directly and also the training of counselors and the implementation of the foundation's newborn screening program of the disease.”
However the article gave a possible answer as to why an organization like the Ghana National Petroleum Corporation would do such a thing. Professor Kwaku Ohene-Frimpong felt that the “GNPC, impresses foreign National donors, who would be willing to help because they know that when they withdraw their support the program will still go on."
The original article can be found here: http://www.businessghana.com/portal/news/index.php?op=getNews&news_cat_id=&id=204801
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By Sean Marshall
An interesting article was published this week on the issues researchers face when attempting to publish ground breaking findings or begin new and bold studies when policies get in the way. What is interesting about the article was the ending section about a scientist by the name of Donald B. Kohn. IT explained that after spending seven years researching stem cells specifically for the treatment of sickle cell disease he still has five to 10 years of work to go before it can even be approved as a treatment method by the Food and Drug Administration.
The long wait is due to policies put in place, safety standards and other such protocols. They are in no sense bad or time wasting many of these barriers have been put in place for a reason but this article did shed light on why medical processes take so long despite the amount of money and effort put into cures.
It was also mentioned what the process of his potential cure was. “In this method, bone marrow is taken out of the patient, the mutated gene is replaced and the marrow is transplanted back into the patient.” With that being explained it does become clear why there have been so many safety tests and other legalities involved.
The original article can be found here: http://dailybruin.com/2015/06/07/ucla-researchers-seek-to-influence-policy-change-across-diverse-fields/
Relatively short but sweet story was published on the 11th about a little girl's sister curing her sickle cell disease via bone marrow in New York city. A quote from the article sums up the whole endeavor “sisters Elizabeth and Esther Adegboyega are nearly inseparable but a recent act has made them even closer.” Essentially that's all there is to say Elizabeth had sickle cell disease and her sister Ester gave her a bone marrow transplant and as of right now the doctors at Hackensack Medical Center have cleared Elizabeth of her sickle cell disease. This was covered by ABC news and a short video summing up the events as well as the original article can be found here: http://7online.com/health/sickle-cell-anemia-patient-cured-thanks-to-her-little-sister/778702/
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By Sean Marshall
A Press releases surfaced this week that explained that The Sickle Cell Disease Association of America, Inc or the SCDAA for short has “been designed to serve the National o serve as the National Backbone Organization for the Health Resources & Services Administration.” The Health Resources and Services Administration (HRSA) has implemented a newborn screening process. They have plans to work with community based organizations as well as the five highest religious based off of numbers and implement a “strengthened approach to care, collective impact and strategic activities within the sickle cell community.”
The general plan seems to be spreading awareness to the specific areas effected by sickle cell disease rather then across the nation in an attempt to help those who need it most.
It was outlined that the SCDAA has “crafted a multifaceted national program to identify patients with sickle cell disease and link them to high quality care within their communities.” This is supposedly going to be done through community based outreach programs. It was explained that “Through community-based efforts the program will institute a systematic community engagement recruitment process in order to find patients needing access to care and assist them with continuous care coordination and education
Again it appears that the main goal is to find those with sickle cell early on and get them the medical attention they need as well as the proper education to have an active and full life.
If you want to see the original press release it can be found here: However take in mind this is a press release which is essentially an add. So take all this information with a grain of salt no matter how fortunate it may be.
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This section is solely to let our Sickle Soldiers tell their story trials & tribulations alongside things they feel are wrong in the Sickle Cell Community