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:
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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
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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/
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By Sean Marshall
It was reported by YDR lifestyle as well as No Sweat, York that yoga may be the next big thing to help people with sickle cell get the exercise they need. It was explained by the author of these articles Thorne McFarlane, an individual that suffers form sickle cell that unlike many more psychotically demanding sports or physical activities that “left me humiliated in a puddle of my own inadequacy. In trying to keep pace with my classmates, I was often left breathless.” However according to Mcfarlane yoga gave a balance back into their life.
The article itself is more of an experience piece rather then one of authority what it lacks in data figures and charts it makes up for in real life experiences. Mcfarlane admits that they are no champion of yoga and that they have no medical expertise about the human body but that having a physical activity that allowed for them to exercise be part of a group without a competitive atmosphere made dealing with sickle cell that much easier.
The report is much more detailed and these are really just the highlights but its worth a read none the less to just see another persons struggles with sickle cell disease and how they overcame them.
The more detailed story can be found here: http://www.yorkblog.com/nosweat/2015/05/07/place-of-placidity-seeking-inspiration-and-balance-through-yoga/#more-11653
Good news out of India this week. It was reported by The Times of India this week that a sickle cell NGO specifically the Sickle Cell Society of India or the SCSI for short is pushing to make sure that Sickle Cell awareness day is more widely known. It was explained that the organization has been able to meet with finance minister Sundhir Mungantiwar to request that the state start marking the date with awareness drives and other campaigns.
So far they are still waiting on a response however the SCSI are staying positive a quote from the article sums up their feelings on the issue. “Like awareness day for all major diseases is observed, so should also have a sickle cell day. The day can also double up as the occasion when the facilities given to the patients and their problems can be discussed with government representatives."
The full article can be found here: http://timesofindia.indiatimes.com/city/nagpur/Demand-for-observing-sickle-cell-day/articleshow/47134964.cms
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This Week in Sickle Cell News to April the 27th May the 3rd
By Sean Marshall
Budget cuts in Illinois State is set to affect Chicago residents as well as college students from out of town living in the Chicago area living with sickle cell. It was reported by the North West Herald and the associated press on the 27th of April that “a bipartisan deal to cut $300 million in spending in Illinois.” In the article it was mentioned that “ he Chicago Tribune reported the deal reached weeks ago by Gov. Bruce Rauner and lawmakers calls for a 2.25 percent spending cut across much of state government.”
However the cuts were not done out of spite or malice. It was reported that the cuts were made in order to close a $1.6 billion hole in this years current budget. The reason why it affects students is because “as many as 3,000 students will miss out on grants this school year.” The grants specifically targeted all involve breaks that students will illnesses like sickle cell suffer from. The reason the cuts affect residents is that funding for the Chicago sickle cell center at the University of Illinois Hospital & Health Sciences System. As of right now the center has a looming budget cut of $500,00.
The article did mention that other areas were affected as well. Giving the example of other cuts include “$419,300 from a state Department of Human Services domestic violence shelter program and $225,900 from an agency program for expectant parents.”
The full article can be found here: http://www.nwherald.com/2015/04/27/illinois-budget-cuts-to-affect-students-sickle-cell-center/af7g8on/
The latest medical news has reveled that a new drug designed to treat sickle cell anemia pain is not being prescribed as actively as it could. The only reason for the discovery is because of a study guaging drug use in hospitals. It was announced this week that the beneficial sickle cell drug Hydroxyurea despite being a strong pain reliever has been prescribed lower then most pain drugs treating sickle cell disease. In articles published by Medicalpress and Helio, both news sites that relay information about blood disorders and other medical, issues reported that “The recommendation from the 2014 NHLBI guidelines to treat all adults with sickle cell anemia and 3 or more moderate to severe pain crises within 1 year with hydroxyurea was rated strong based on high-quality evidence reviewed in 2008,”
The drug itself is very beneficial the study that the articles were based off of explained that “3 out of 4 patients with extreme pain due to sickle cell could benefit from hydroxyurea.”
The main reasons the drug has not made it into the hands of those in need was also covered in both articles. ““Several barriers to treatment have been identified, including fear of adverse events, lack of clinical training and failure to engage in shared decision making. Our estimate reflects the combined effect of all barriers to treatment, regardless of source.” Because of the recent news however the drug is becoming more available.
The Both article can be found here:
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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