By Sean Marshall
Slow news week but non the less there was still some interesting things going on. Like a study's finding on the population of India and who as sickle cell anemia diseases. It was reported this week by The Times of Indian that 10% of tribal people are affected with sickle cell anemia. It was reported that Prime Minister Narendra Modi has “serious cause for concern with tribal-dominated Jharkhand( a state in eastern India carved out of the southern part of Bihar) last emerging as home to an alarmingly high number of people afflicted with sickle-cell anemia.” This article had only surfaced this week because “according to a study conducted by the state health department,(of India)more than nine lakh tribals are suffering from the fatal disease.” With the total population of Inda to account for this equals according to the report “10% of the state's total tribal population as per the 2011 census.” The article also outlined the findings of the survey, specifically comparing Jharkland to the rest of the world. “The findings, which were laid out at an internal department meeting early this week, puts Jharkhand right next to Chattisgarh as the worst-hit state, and ahead of Odisha. While Chattisgarh is home to 10 lakh sickle-cell anemic people, Odisha has six lakh affected people.” For those who don't know a lakh is a unit in the Indian numbering system equal to one hundred thousand. So the quote really reads Chattisgarh is home to 10000000 people sickle cell anemic people. This is why this study is important because it affects a lot more people then the average person would think These numbers are startling and this is why the prime minister is at least reading the latest report. Now the international world just has to be patient and hope progress is made soon. http://timesofindia.indiatimes.com/city/ranchi/10-of-tribals-afflicted-with-sickle-cell-anaemia/articleshow/48037811.cms If there are any comments questions or concerns email us at thesicklecellinme@gmail.com
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By Sean Marshall
News from Trade Arabia Business News Information outlined that sickle cell daycare facilities were opened in Bahrain. On the 5th of July the county's main hospitals opened up daycare units to treat children and adults with sickle cell disease. This was all done in an attempt to “reduce waiting lines at the accident and emergency department of Salmaniya Medical Complex and prevent patients from being admitted overnight,” Originally the health unit was only to cater to men but the article did explain that in the evening of the 5th changes were made. “the Health Ministry said yesterday women and children will continue to receive treatment at the accident and emergency department until further notice.” The article did mention that this whole idea was based off of the recommendations of a ream of US experts that have had similar success with the Johns Hopkins Hospital Sickle Cell Infusion Center for Adults. For more information the original article can be found here: http://www.tradearabia.com/news/HEAL_285606.html News from bizjournal.com has reported that a Fred Hutch researcher gets $12.9M for 'bubble boy,' sickle-cell anemia work. The researcher is one Dr. Rainer Storb. There goal is to create current gene therapies that affect non lethal non cancerous blood disease like sickle cell disease. In a quote Storb further outlined an issue that their work to deal with. “Current approaches at cell and gene therapy for lethal noncancerous diseases of the blood and immune systems have inherent toxicities that may affect patients for the rest of their lives,” Storb further explained that “the targeted therapies proposed under this grant aim to eliminate these toxicities." The research being done will also look at “at ways blood stem cells can be transplanted to treat immune deficiencies and noncancerous blood diseases, such as sickle-cell anemia and Severe Combined Immunodeficiency, also known as "bubble-boy" disease.” This however is just the beginning nothing has been official as a cure. This isn't to say that this won't work out but as of right now we are looking at step one in a long process. But every step forward in fighting sickle cell diseases is a good one. Link to the original for more information can be found here: http://www.bizjournals.com/seattle/blog/health-care-inc/2015/07/fred-hutch-researcher-gets-12-9m-for-bubble-boy.html If there are any comments questions or concerns email us at thesicklecellinme@gmail.com By Sean Marshall
Good news for those with sickle cell in Jamaica. The good news is in reference to news reported by the Jamaican Observer. Specifically comments made by the Health Minister Dr. Fenton. He has found specifically “research done by the Sickle Cell Unit, showing a downward trend in mortality by 10 years of age in children diagnosed with sickle cell disease at the time of birth.” It was with the High Performance Liquid Chromatographer or the HPLC for short. The device was purchased from Brazil in an attempt to strengthen the sickle cell program in Jamaica. The device is intended to “facilitates screening at birth, which allows for early detection of the sickle cell trait.” The reason this is implemented according to the article was to reduce the number of child and mother mortality rates. In an attempt to stop deaths due to complications or misdiagnosis of sickle cell. Here is a link to the original article: http://www.jamaicaobserver.com/latestnews/Brighter-future-for-children-born-with-sickle-cell-disease---Ferguson Other news this week featured genome editing the article was posted on genomweb.com. It mainly focused in CRISPR-Cas9 a genetic editing therapy. Although many articles tend to lean towards the miracles of genetic therapies there were some warnings that these processes 'wont be available for years, if at all.” The whole idea behind gene therapies is to address the question “What if you could go right to the root cause of that disease and repair the broken gene?” This is what the article said is why the scientific community is so excited they are close to turning this what is into a reality. The article stressed something that we will soon be at the point but “There are, though, a few stumbling blocks.” The good news is that the university of California are already attempting to put the steps in order when gene therapies are perfected. It was explained that “the first treatments will likely involve taking a sample of a patient's blood, treating the blood cells, and returning them,” Lastly it was mentioned that in a quote by Jacob Corn, managing director of the Innovative Genomics Initiative that “in 10, 15 years, our relationship with genetic disease will be very different from today." This was mainly to address the fact that this article may not be the most positive but it is looking to the future while dealing with the problems of the present. The full original article can be found here: https://www.genomeweb.com/scan/crispr-excitement If there are any comments questions or concerns email us at thesickleinme@gmail.com 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 If there are any comments questions or concerns email us at thesickleinme@gmail.com 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 If there are any comments questions or concerns please email us at thesickleinme@gmail.com 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/ If there are any comments questions or concerns email us at thesickelinme@gmail.com. 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. http://www.prurgent.com/2015-06-03/pressrelease386545.htm If there are any comments questions or concerns email us at thesicklecellinme@gamil.com By Sean Marshall
Slow news week for the end of May there were however the latest medical news involving sickle cell anemia was reveled this week seems to be promising. News Medical released information pertaining to Mast Therapeutics initiates Phase 3 extension study of vepoloxamer in sickle cell disease. What this means is that Mast Therapeutics, a clinical bio-pharmaceutical company is pushing to develop non therapeutic drugs to treat sickle cell disease and it is in its later stages of testing. According to the report the company has recently created a drug that should ease the pain as well as cure some aspects of sickle cell disease. The drug itself has been labeled as vepoloxamer but the study has been given a catcher name “EPIC-E.” There will however have to conduct a study on human beings before it is released into the market place. This is where the “EPIC-E” goes into effect. The study has been initiated and will “enroll patients who have completed the Company's Phase 3 EPIC study and are hospitalized for a subsequent vaso-occlusive crisis.” That is anyone who suffered from sickle cell disease as well as heart conditions. The company itself has gone on the record as saying "We have initiated EPIC-E consistent with our prior guidance and plan to make this extension study available at almost all of our more than 70 EPIC sites." This is all good in theory but drug companies have said this before and not reveled all information to the public so take this with a grain of salt. The original article can be found here: http://www.news-medical.net/news/20150526/Mast-Therapeutics-initiates-Phase-3-extension-study-of-vepoloxamer-in-sickle-cell-disease.aspx If there are any comments questions or concerns email us at thesickleinme@gmail.com By Sean Marshall
Not many new news updates this week. The top story would involve The Sickle Cell Society's Annual general Meeting date was announced this week. According to blacknet.uk “ The Sickle Cell Society’s Annual General Meeting will be held on Saturday 18th July at Grand Connaught Rooms, Holborn, London WC2B 5DA.” The announcement was meant to enable those to help “direct the Sickle Cell Society”, those who can attend are also invited to an educational seminar stressing the latest developments in “Utero Gene Therapy in a talk led by Dr Stavros Loukogeorgakis.” The big hook of this years assembly is “Is this pioneering new treatment a “cure” for sickle cell?” This is of course related to the advancement of Utero gene therapy over the last few years. Utero gene Therapy is the practice of changing the genetics of a child still in the uterus. This is usually done to stop fatal disease and disorders that would cause a difficult and short life. This years guest speaker is specifically address if and possibly when the act of Utero gene therapy could stop sickle cell from happening. Fortunately this years assembly is also free to any that arrive. However the article adverting the event warned that “but place are limited so book your space today.” More information can be found here: http://sicklecellsociety.org/upcoming-event-sickle-cell-society-agm-london-18th-july/ The original announcement can be found here: http://www.blacknet.co.uk/upcoming-event-sickle-cell-society-agm-london-18th-july-2/ Other news involved an Orangeburg's Jeddah Temple presented a $5,185 check to the Orangeburg Area Sickle Cell Anemia Foundation Inc. Orangberg is a city found in South Carolina and the Jeddah Temple 160 was not short on cash or heart. It was explained in the article that “the funds will go toward assisting sickle cell patients pay their utilities, medical bills and fuel costs.” The money was raised because the local sickle cell funding in the area has been cut b 33% and local temple goers wanted to give back to the community. The article also went out of its way to explain what a Jeddah is “currently, the Orangeburg Jeddah Temple has about 100 members and is affiliated with the Ancient Egyptian Arabic Order Nobles Mystic Shrine North and South America Inc. The non summarized original article can be found here: http://thetandd.com/news/jeddah-temple-makes-donation-to-orangeburg-area-sickle-cell-anemia/article_886b44a8-29b6-51a9-adfe-37d76bbbbeea.html Any comments questions or concerns email us at thesickleinme@gmail.com By Sean Marshall
Strange yet fascinating news this week involving sickle cell disease and erectile dysfunction. It was reported by News Sentinel,, a news agencies working out of Fort Wayne Indiana, that new information has come to light explaining hwy men with sickle cell diseases suffer from a statistical likely hood of priapism when taking erectile dysfunction medicine over men who do no have sickle cell disease. The act of priapism for those who don;t know is defined by the Mayo Clinic as “priapism is a prolonged erection of the penis. The unwanted, persistent erection isn't caused by sexual stimulation or arousal, and priapism is usually painful.” It was explained that ED drugs cause excessive blood flow to the penis and since men who have sickle cell disease have sickle red blood cells the often “causes deformed red blood to get stuck in the penis, maintaining an erection.” This left unchecked can lead to serious heart risks. Unfortunate the leading way to solve this issue once it has occurred treatments involving “medications injected that help the blood flow, drain, or stagnated blood can be extracted with a large needle.” The most important thing to take from this is to always contact your doctor about any prior medical conditions before taking any drug. The original article can be found here: http://www.news-sentinel.com/apps/pbcs.dll/article?AID=/20150511/LIVING/150509746 Other more uplifting news this week features new discoveries about human genome mapping that could allow doctors and scientist a way to cure sickle cell disease. It was explained by The Medical Daily as well as the Health Site that “scientists at the University of South Wales n Australia have discovered a gene editing technique that could lead to new treatments of sickle cell anemia and other blood disorders.” For those who have been following This Week in Sickle Cell News this may sound familiar. Several moths ago this was all theoretical but as of recently a new gene editing technique known as TALEN has now made it possible. This is all done by “introducing a naturally occurring genetic mutation back into the cells.” This then allows doctors and scientists the ability to “increase the oxygen carrying capability of the hemoglobin,” this would essential relive many of the symptoms and damaging effects of sickle cell anaemia. This process is often refereed to as changing one of the sequences or letters in someones DNA. Everything else mentioned in the article is a rehash of what was said a few months ago. But to catch up anyone who missed it. The process changes adult hemoglobin to share similar traits of hemoglobin found in a fetes, thereby tricking the body into producing a protein molecule that delivers more oxygen to red blood cells. The red blood cells then get enough oxygen to avoid turning into a sickle shape granting relief from sickle cell anemia. Both articles can be found here: http://www.medicaldaily.com/sickle-cell-anemia-cure-foreseeable-after-scientists-use-gene-editing-revert-333340\ and here: http://www.thehealthsite.com/news/a-new-technique-might-help-to-deal-with-sickle-cell-anemia/ If there are any comments questions or concerns email us at thesickelinme@gmail.com |
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