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 If there are any comments questions or concerns email u at thesickleinme@gmail.com
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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: http://www.healio.com/hematology-oncology/hematology/news/online/%7B3f04f282-d308-4786-875a-fabab761c2e5%7D/hydroxyurea-may-be-underused-for-patients-with-sickle-cell-anemia http://medicalxpress.com/news/2015-04-sickle-cell-patients-beneficial-drug.html For any comments questions or concerns email us at thesickleinme@gmail.com By Sean Marshall
The National Post reported this week that British Doctors cure children of deadly inherited disorders using stem cells. It was stated that doctors in Britain have cured inherited blood disorders in children using “ground breaking stem cell treatments. That heralds a new dawn for genetic therapies.” The reason this is coming to light now is because according to the article patients with “severe and rare blood disorder Wiskott-Aldrich Syndrome have been free of the disease for four years now.” Since this rare condition has been successfully treated it opens up new possibilities for the treatment of other more common blood disorders. The article even mentions that people with sickle cell anaemia could be the next group to be treated. The complete article can be found here: http://news.nationalpost.com/health/stem-cell-treatment- wiskott-aldrich-syndrome-748293 Medical Marijuana made it into sickle cell news this week. A one hour special on CNN on WEED 3 debuted and Trauma neurosurgeon Dr. San Jay Gupta brought up the benefits it can have on those suffering from sickle cell disease. For those who missed the special WEED 3 is “the use of medical cannabis to treat PTSD, lessen the epidemic of painkiller overdoses in the U.S., treat Alzheimer’s and manage the pain of sickle cell disease.” For those how are unfamiliar Dr. Gupta is CNN's chief medical correspondent and is most noted for changing his mind in August 2013 on his stance for medical marijuana use for treating illnesses linked to chronic pain. This was a historic moment because the medical benefits of cannabis are being exposed as an alternative way of helping those suffering from sickle cell anemia. The article sated it was a “historic moment in medical cannabis’ history to have such a major platform air footage of the kinds of stories that for too long only appear in the dry papers of medical journals.” These highlights were all covered by smellthetruth.com a website generally focused on the positive effects of marijuana. The original unabridged version can be found here: http://blog.sfgate.com/smellthetruth/2015/04/21/the-science-behind-sanjay-guptas-weed-3/ Any comments questions or concerns please email us at thesickleinme@gmail.com By Sean Marshall
Medical Marijuana has now been legalized in Georgia. According to LatinosHealth.com “under the new law, it is now legal for people to possess up to 20 ounces of cannabis oil.” The law however is not that simple. There are other additions as well such as “the oil must not contain more than five percent tetrahydrocannabinoaddations (THC).” THC is the element that causes the user to feel “high” or “stoned.” The article mentioned that the law was passed in order to help aid individuals suffering from many different chronic pain or other life threatening illness. Of the list of eight approved illnesses sickle cell anemia was on the list. It was explained that children as young as five years can revive treatment if they suffer from one of the eight disease. This means children may not suffer from the pain of sickle cell. It is still illegal to posses marijuana in Georgia but if you sufferer from sickle cell disease and have been given a prescription to deal with the pain there should be no legal ramification. The original article can be found here: http://www.latinoshealth.com/articles/5547/20150417/marijuana-legalized-in-georgia-8-diseases-medical-cannabis-can-help-cure.htm T-Boz performed a charity concert for sickle cell disease on the 19th of April, It was stated on BET's website that the show is going to “be a star studded event for a great cause.” The concert will be located in Los Angeles at the Grammy Museum and feature the talents of Faith Rvans and Kat Graham. It was explained that “all proceeds from the event will go to the Sickle Cell Foundation, a charity that the 44-year-old has been a part of for years.” According to the article the reason why the famous musician is doing all this is because “T-Boz has struggled with the inherited blood disorder from birth.” It was also explained in the article that the lowest accepted donation of $10 will grant access to the live stream of the event while the highest of $199 will reward one ticket to the live event with priority seating in the first few rows in addition to a meet-and-greet with T-Boz herself. The original article can e found here: http://www.bet.com/news/music/2015/04/16/t-boz-to-perform-charity-concert-for-sickle-cell-awareness.html If there are any comments questions or concerns email us at thesickleinme@gmail.com By Sean Marshall Interesting news this week involving the untied States government. A Bill was passed this Thursday from Florida Legislation that would allow research in sickle cell disease to be eligible for Closing the Gap Grant Program. This story surfaced on Saintpetersburgblog.com and outlined bill SB 94. It was explained that the organization Closing the Gap, the one bill SB 94 directly affects, will most likely be using the grant money to “eliminate, eradicate, facilitate and educate people about the sickle cell disease and eventually, at some point, we will be able to end this in the state of Florida.” There were some conditions however. It was noted that “projects receiving grants are required to be matched by local funds. The local community must match $1 for every $3 of grant money provided. A portion of the required matching funds may be in-kind contributions in the form of free services or human resources.” It was pointed out that the bill only came to pass because of its sponsor by state Senator Arhenia Joyner as well as state representative Bobby Powell. If you would like to read the full article follow the link: http://www.saintpetersblog.com/archives/225248 Unfortunately this week the only specialized sickle cell center for adults in the Midwest United States is on the chopping block. This issue was first featured on myfoxchicago.com and explained a proposed bull in the Illinois state budget is no longer going to be providing funding at the university of Illinois Hospital in the city of Chicago. According to the report, “it's the only outpatient and comprehensive care center in the Midwest, dedicated to treating adults.” Not only that but it was also reported that “the center has cured twelve adults with sickle cell, using groundbreaking stem cell procedures but by July 1st it could be gone.” Sadly there is no funding for the center in the proposed state budget. If you would like more information you can find the article here: http://www.myfoxchicago.com/story/28725798/funding-cut-to-uic-health-sickle-cell-center If there are any comments questions or concerns email us at thesickleinme@gmail.com By Sean Marshall
Good news for those suffering from sickle cell in the Zambia Republic in South Africa. According to Healthcare inc Boston, the Massachusetts General Hospital's Center for Global Health is helping to fund a sickle cell diagnostic machine to the Whitesides Research Group. It was explained that Whitesides Research Group has been “working on a diagnostic for years and has a prototype that has been tested in both the lab and in Zambia.” In the article it was stated that The $100,00 given by the Center for Global Health will go towards helping “engineers perfect the prototype, as well as ensure that the prototype functions within a larger manufacturing and shipping process.” It was explained that the machine works by “filtering blood into a solution that is able to parse out cells on their density. Sickle cells are denser then normal red blood cells and sink to the bottom of the solution.” The whole reason why researchers in Zambie are even doing this is because there are 300,000 newborns each year in sub-Saharan Africa and India. With those high numbers in an area greatly affected by sickle cell disease a machines that can easily test and then diagnose sickle cell could save a lot of lives. The original article can be found here: http://www.bizjournals.com/boston/blog/health-care/2015/03/mgh-gives-grant-to-low-cost-sickle-cell-diagnostic.html Other news involved The Bethune-Cookman University’s Odessa Chambliss Center for Health Equity is sponsoring free sickle cell screenings for the community in April and May. This article was produced by The Daytona Times on the 2nd of April and involved the reasons behind why the center has decided to take this particular course of action against sickle cell disease. The article explained that a “grant received from Volusia County Government will pay for the tests, which will be administered at no cost by nurses from Halifax Health Medical Center.” This grant was revived in January but it wasn't until now that the decision on what to do with the money was made. It was stated that the decision was made based on what would benefit the community the most. The idea was that id someone knew they has sickle cell, or a sickle cell trait a person would could avoid reproducing with another individual who has sickle cell or the trait and thus cut down on sickle cell disease in the community. Lastly the article pointed out that “if they know they have sickle cell they can Empowering patients to know if they have the trait so when they start dating they can ask the other person ‘Hey, I hate to ask you, but do you have the trait?’ So then they can make the decision (to discontinue the relationship) in the beginning when there aren’t as many feelings involved.” If you would like to read the original article it can be found here: http://daytonatimes.com/2015/04/b-cu-center-to-provide-free-sickle-cell-screenings-in-april-may/ If there are any comments questions or concerns email us at thesickleinme@gmail.com By Sean Marshall
An article was posted on the 25th of March on Health Aim’s website this week about scientists identifying an enzyme in blood stem cells that could prevent sickle cell from occurring. It was explained in the article that scientists from The Scripps Research Institute conducted a study on stem cells’ ability to reconstruct and divide. The reason this whole study was being conducted was that it appeared that there is an enzyme in red blood cells that regulates how fast they divide and repair cells. When foreign stem cells are introduced into the body the enzyme, named HSC, remains active to long and then disappears causing “causing the test subjects in this case mice to lose all there red blood cells and die.” The article stressed the reason this is so important is because certain anemia’s both sickle and other are often caused by certain deficiencies. For an example sickle cell has a vitamin D deficiency while another blood anemia can be caused by a lack of B12. The article then explains that with all this knowledge at there disposal there could be a way to combine there new found knowledge of HSC with the treatments at hand and combine them to cure many different blood anemia including sickle cell. If you would like to see the full details the full article can be found here: http://www.healthaim.com/scientists-identify-turnkey-enzyme-blood-stem-cells-prevent-anemia/18446 A new study was released this week by medical press that when comparing a healthy pregnancy to one where the mother to be has sickle cell disease the one with sickle cell disease is “six times more likely to die during or following child birth, have an increased risk of stillbirth, high blood pressure and preterm delivery.” The article did explain that previous research has identified an “association between sickle cell diseases and high-risk pregnancy; however, specialists have not yet been able to estimate a woman’s individual risk for specific complications, nor have they been able to identify groups of women at highest risk.” Unfortunately it was explained that the medical world lacks the proper evidence to diagnosis individuals. This means all that doctors can do at the moment is inform patients of all the risks that could happen instead of telling a patient if they are more likely to suffer from one symptom over another. There is a team of researchers from Kings College in London England attempting to find answers. Their work has revealed that “that pregnant women with classic SCD living in a low-income country were at the highest risk for complications.” The last quote of the article may have been the most powerful. It was stated that “even in developed countries with advanced care, there continues to be a much higher maternal mortality rate in women with sickle cell disease compared to the general population.” The entire article can be found here: http://medicalxpress.com/news/2015-03-pregnancy-complications-women-sickle-cell.html If there are any comments questions or concerns email us at thesickleinme@gmail.com By Sean Marshall
In a historic turn of events this week the state government of India has finally cleared bill Rs15.11. It was reported by The Times of India that bill Rs15.11. Had come to pass. The bill will allow “sickle cell patients who can now travel free of cost along with one companion in state transport buses.” People with sickle cell disease will have to carry around id that confirms they do have sickle cell but this will be issued in the form of a certificate. It was explained that the certificate would most likely be issued “either from State Blood Transfusion Council or the civil surgeon along when they travel.” It’s also worth mentioning that it was outlined that “in the absence of a certificate, during urgency, the patients can use a sanctioned letter from a medical officer at the primary health centre and use it as a substitute.” The whole reason the bill existed was because SCSI president Sampat Ramteke anted people to know how tough it is for “poor sickle cell patients who have to travel frequently for treatments. This initiative was taken to help them out specially.” The article also highlighted that the SCSI had been fighting over the past two years to make his happen. The importance of this relatively small news article is that again this really shows that when a country priories the wellness of those suffering from sickle cell anything is possible. The Indian government feels sickle cell is a priority and they are doing something about it. If you would like to see the original article it can be found here: http://timesofindia.indiatimes.com/city/nagpur/State-clears-Rs15-11cr-for-sickle-cell-patients/articleshow/46602235.cms Other news this week includes a new global initiative to address blood disorders. It was reported by Astro Awani, a news organization in Malaysia, that “Malaysia was the proud host to the recently concluded Human Genome Meeting (HGM) 2015, a ‘meeting of minds’ in the discourse of genomes where almost 400 delegates attended the event.” For those who don’t know HGM defines itself as “an annual conference which took place since 1996,which has since morphed into a major dimension of scientific conference for discourses on human genetics and genomics, genomic medicine and genomic biology.” The four-day HGM 2015, which began last Saturday on the 18th of March and finished on the 22nd was held at the KL Convention Centre (KLCC). Although only a press release has been issued one of the main talking points was sickle cell disease. Many of their goals for 2015 and beyond were “build an evidence base for the better management of delivery of local treatment, care and eventually cure for these diseases by ensuring that there is sufficient local capacity to deliver services.” Other promises included human genome projects and a stronger focus on children with blood diseases. For a full look at the press release go to the link below: http://english.astroawani.com/lifestyle/new-global-initiative-launched-address-genetic-blood-disorders-55780 If there are any comments questions or concerns email us at thesickleinme@gmail.com By Sean Marshall
Big news this week according to newsmedical.com researchers at John Hopkins have “ successfully corrected a genetic error in stem cells from patients with sickle cell disease, and then used those cells to grow mature red blood cells.”It is explained that there are still some issues to overcome. For example “over time, patients’ bodies often begin to mount an immune response against the foreign blood. Their bodies quickly kill off the blood cells, so they have to get transfusions more and more frequently.” It was noted that “A solution could be to grow blood cells in the lab that were matched to each patient’s own genetic material and thus could evade the immune system.” Also it mentioned that specific research groups have already devised a way to use stem cells to make human blood cells. But unfortunately there always seem to be issues with success. It was pointed out that “The problem for patients with sickle cell disease is that lab-grown stem cells with their genetic material would have the sickle cell defect.” There is however the technique of “growing blood cells from stem cells will have to be made even more efficient and scaled up significantly. The lab-grown stem cells would also need to be tested for safety. This study shows it may be possible in the not-too-distant future to provide patients with sickle cell disease with an exciting new treatment option.” If you want to see the original article it can be found here: http://www.news-medical.net/news/20150310/Researchers-use-stem-cells-from-sickle-cell-disease-patients-to-grow-mature-red-blood-cells.aspx If there are any comments questions or concerns please email us at thesicklecellinme@gmail.com By Sean Marshall
This week’s news started off with a bang. On the second of March 2015 a hematology medical journal called the journal blood published some interesting findings. The site Newswire and Duke Medicine the began the journal’s discoveries by outlining an investigative therapy that could stop many problems sickle cell anemia causes. It was explained that in a small study conducted by Marilyn J. Telen, M.D. at Duke University “patients who revived an investigative drug, for sickle cell disease, had quicker resolution to pain episodes.” It was hover mentioned that “although the difference compared to a controlled group did not rise to a statistical significance.” It was noted that “patients who received the drug also used far less pain medication, which was self-administered. Those findings were statistically significant.” Other information states that “the drug is designed to prevent cells from sticking together and thereby improve blood flow. For study participants who received the drug, the effects tended to begin within 24 hours, and their painful crisis passed sooner than those receiving only treatment for pain, but the statistical difference was not significant.” If you would like to read the original article it can be found here: http://www.newswise.com/articles/investigational-therapy-could-attack-cause-of-sickle-cell-crises?ret=/articles/list&category=medicine&page=1&search[status]=3&search[sort]=date+desc&search[section]=10&search[has_multimedia]= Protesting due to the treatment of sickle cell patients was also a big news event this week. On March 3rd the Leadership, one of Nigeria’s top newspapers, reported that sickle cell patients, their family members and friends “halted tragic at the Osadelbey Avenue leading to government house for severla hours with bonfires.” This was all done because because the state government is not giving permanent employment or even casual (part time) employment to staff at sickle cell centers. It was explained that the protestors took to the streets to “protest to create awareness that the sickle Cell center was set up by law as a Health Center to cater for the treatment of sickle cell sufferers has been converted into the office of the state ministry of health”. However to show both sides the National reported that according to the health commissioner of Nigeria “The Centre is set up mainly for research, education and advocacy into sickle cell but over the years, people have allowed some certain things to go wrong but I have pointed it out to them. Yes, there is laboratory to help in promoting access to healthcare delivery for sickle cell patients but at the same time, we have one doctor who is here to help in counselling and we help in handling minor ailment which we do but it was never set up with the aim of creating a hospital for treatment, particularly for the admission of patients.” If you want to know more follow the link: http://leadership.ng/news/415035/protest-sickle-cell-patients-set-bonfire-over-alleged-forceful-relocation If there are any comments questions or concerns email us at thesickleinme@gmail.com |
AboutThis section is solely to let our Sickle Soldiers tell their story trials & tribulations alongside things they feel are wrong in the Sickle Cell Community Archives
March 2016
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