By Sean Marshall
Football season is in full swing but like all aspects of life sickle cell has affected it. Now in the last days of sickle cell awareness month the mainstream sports media has finally become aware
One story that has pooped up in the media involves was the condition of Baker Mayfield of Oklahoma University's football team. According to The Norman Transcript, a news organization that handles news coverage for Oklahoma's university and the Norman region, Baker Mayfield cannot play this season.
This does not at first appear to be big news a player not being able to play football, happens all the time, what is unique to the situation. The situation is unique because according to The Norman Transcript is that Mayfield has sickle cell anemia.
However Mayfield has played before has "started seven games for Texas Tech last season as a walk-on, transferred to OU in January without being granted a release by the Red Raiders." Which begs the question if he was good enough as a stand in when there was no other choice why is his illness an issue now.
It was even explained that "Mayfield has argued through his attorney, Jim Darnell, that since he was a walk-on, typical transfer rules should not apply." But unfortunately The NCAA specified it the 2014-15 transfer manual that it makes no distinction between scholarship recipients and walk-ons in such a case.
The article did outline other individuals who suffer from sickle cell disease and play college football. These examples were West Virginia: Defensive end Charles Tapper was helped off the field late in the West Virginia. OU coach Bob Stoops said Tapper did not suffer an injury.
His coach did explain that "Charles has a sickle-cell trait and at certain levels of exhaustion, that's dangerous. He's taught through our medical team that if he gets in that situation, no pun intended, he has to tap out." As of this point it is still uncertain if Mayfield will play.
This is very interesting because another article with similar situation was written this week as well. In direct relation to the last news story another article this week also focused on Charles Tapper. The piece of football came from newsok.com. The article highlighted many of what Mayfield is going through however Charles Tapper of the Oklahoma juniors has been able to play football despite his sickle cell anemia.
The article went into depth about how Tapper left the Sooners’ 45-33 win at West Virginia last weekend in the fourth quarter because of exhaustion brought on by his sickle cell trait.
The reason why there is so much commotion is because California defensive end Ted Agu died in February during a training run, and it was reportedly because of complications from sickle cell trait. This has a lot of officials second guessing players with sickle cell disease.
The good news is that Tapper has had a solid season and will continue to play his stats this season include "a recorded nine tackles and one sack so far through four 2014 games."
This does beg the question why Tapper gets to play despite having to "ask out of the game, as the exhaustion reached levels where he had to be careful." Yet players like Mayfield don’t even get the option.
If you would like to read more about the two stories and compare them find it here Mayfield’s here: http://www.normantranscript.com/sports/article_a45ba542-42cc-11e4-8035-df2cf2490456.html
And Tapper's here: http://newsok.com/bob-stoops-de-charles-tapper-has-sickle-cell-trait-which-caused-exhaustion/article/5344459
Either way it’s a good thing sickle cell is getting as much attention despite the circumstances.
Other football articles talking sickle cell this week includes an article from a Redskins blog explaining how Washington Redskins' safety Ryan Clark was wearing red cleats with white lettering pointing out the staggering sickle cell statistics in order to raise awareness about the disease.
The blog explained that "these cleats will have sickle cell facts, the sickle cell symbol and Cure League." This is Ryan Clark's foundation dedicated to raising money for sickle cell disease reach, clinical care and increased awareness
The article also mentioned that in 2007 "Clark experienced severe discomfort, later finding out that he has sickle cell trait."
This past Friday after the game the cleats were auctioned off on CureLeague.org, with all proceeds going to sickle cell research. The 14-year veteran also made a $25,000 donation.
If you would like to learn more go to the link: http://blog.redskins.com/2014/09/24/ryan-clark-to-wear-red-cleats-to-promote-sickle-cell-awareness/
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By Sean Marshall
Ugandan sickle cell patients are getting a new trial drug this week. An article published on newvision.co on the 16th of September explained that over 200 Ugandan citizens with sickle cell anemia are part of a clinical trial for an effective new rug to fight sickle cell disease. The drug is called Hydroxyuria and is designed to "manage acute pain and reduce the need for blood transfusions in children."
Hydroxyuria has had success in The United States and Europe but this is the one of the first clinical trials in their own country. The clinical trials are supposed to start October and the test subjects have been specified to show "that only children aged between 12 and 47 months are eligible to take part in the one-year clinical trial." This is due to the fact that the drug has the most drastic effect on children rather than adults.
The team conducting the testing explained that "the testing would determine the effectiveness of the drug where patients have malaria and its possible side effects." According to the website if the drug is effective it will be included on Uganda's list of essential drugs.
The article also references other sickle cell related topics the Ugandan people are going through. Such issues as the rising levels of babies born with the disease, the numbers are as high as 25,000, or that 12% of the population are carriers.
Other interesting but not necessarily pressing issues covered also included how the regional areas come into play. That in Kenya and Tanzanian coastal towns has a higher rate of individuals who have sickle cell then inland areas.
This was not the main focus of the article but these other aspects are interesting piece of information an when battling sickle cell anemia any little tip or scrap of information could lead to a big breakthrough.
If you would like to learn more about the different issues covered you can go to the link below: http://www.newvision.co.ug/news/659770-200-ugandan-patients-for-sickle-cell-drug-trial.html
Other news this week includes a new home testing kit for anemia related blood illnesses. One version of the story appeared on medgadget.com. It explained that a new technology "could accurately generate an accurate diagnosis from less than a drop of blood." It would work in the same way diabetes blood sugar testing devices work. When scanning blood sugar levels only the device would check for sickling cells or other anemic blood disorders.
The device was tested on 238 different patients ranging from children to adults, the study showed that "the one minute blood sample test produced consistent data and was similar to anemia tests used in the laboratory." The article pointed out that as long as there is interest in the study researchers predict that the handheld device should be in pharmacies by as early as 2016.
If you would like more details on how the ins and outs of the article or learn about the device in more detail you can go to the link provided here: http://www.medgadget.com/2014/09/new-home-diagnosis-technology-for-anemia-with-less-than-a-drop-of-blood.html
Or check out similar stories about the same device here: http://www.news-medical.net/news/20140915/Simple-point-of-care-testing-device-provides-more-rapid-diagnosis-of-anemia.aspx
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By Sean Marshall
There were a few interesting news stories involving sickle cell anemia this week and one of them came from sciencecodex.com. The article was all about the how certain sickle cell sufferers are always victims of discrimination. It also went into detail about how this discrimination can affect the treatment of these individuals. It was explained that people with sickle cell anemia that have been discriminated against "have a 53-percent increase in the chances of not following doctors’ orders."
The study was conducted by The Journal of General Internal Medicine but was originally conducted by Carlton Haywood Jr. of the Berman Institute of Bioethics and the Johns Hopkins School of Medicine in the US. The study was originally went to monitor those who suffer from sickle cell in order to learn how close a patient follows doctors’ orders and the reasons behind those decision.
It was explained by sciencecodex.com’s article that Haywood's team "monitored the experiences of 291 patients with sickle cell disease who were treated at two academic medical centers in the Baltimore/Washington D.C. metropolitan area. The results comprise part of the Improving Patient Outcomes with Respect and Trust." The evidence then showed that roughly a third of the patients did not follow what their doctor had told them. With further studying it was found that "58 percent of the non-adherent group had at least one experience of being discriminated against based on their race or health status."
Other results from the study included such findings as "people who had previously experienced discrimination were 53 percent more likely to not always stick to their physician's recommendations."
What is truly interesting is that the article explained that the findings are consistent with previous studies among other chronically ill patient groups. It shows that this is happening all over North America and it has a profound effect. If there is no trust between patient and doctor how can anyone get better? Even the article commented on this issue by pointing out that "these also show how discrimination affects a patient's trust in the healthcare system, and the person's subsequent willingness to follow prescribed treatment regimens."
If you would like to read more about the study you can find the article here: http://www.sciencecodex.com/sickle_cell_patients_who_experience_discrimination_miss_out_on_treatment-141275
Other news coverage of sickle cell this week included a doctor in Dallas Texas who is trying to create sickle cell guidelines. Doctor George Buchanan of UT Southwestern Medical Center was part of a panel of experts this week that were dealing with top medical issues.
Buchanan was specifically tasked with what the article described as "more than 500 specific directions for doctors who treat sickle cell patients." Buchanan explained one new medication that can really make a difference for the sickle cell community. "One of them is a medication called hydroxyurea that one takes once a day, and this reduces in the blood stream the number of sickle cells," he also continued to recommend treatments including transfusion therapy.
In the article Bunchanan explained the importance of transfusion therapy, "this is one of the treatments of sickle cell that is greatly under-utilized," Buchanan said. He went on to say "all of these things go a long way toward improving quality of life. "The article also explained that with improved medical treatment, nearly 100,000 Americans could lead longer lives.
There was also mention of The Otis Uduebor Sickle Cell Foundation is sponsoring a 5K Race and Family Day at Bachman Lake Park in Dallas from 9 a.m. to 3 p.m.
"We're trying to encourage sickle cell families to come out and get connected with other sickle cell families," said the foundation's founder and President Cynthia Uduebor Washington. The park is located at 3500 W. Northwest Highway. Free food and medical information will be provided. There's a registration fee for the 5K.at Saturday, September. So if you're in the area feel free to drop in next Saturday.
You can find a link to the article here: http://www.wfaa.com/story/news/health/2014/09/12/sickle-cell-blood-diseases-health-african-american-health/15538853/
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By Sean Marshall
September is sickle cell awareness month and to kick It off a new attention grabbing internet challenge has started. The challenged is now being called the sickle cell bottled water challenge. KLFY News 10 broke the story first. They explained that Don Vallien, a 39 year old sickle cell sufferer had started a new internet challenge to raise money and awareness of sickle cell anemia. The challenge is similar to the ALS ice bucket challenge only this time it involves drinking a bottle of ice cold water and donating money towards sickle cell research.
The article went on to say that the challenge is more about raising awareness. Vallien was quoted saying that “he simply wants to let others know they are not alone, and they have a chance to help.” Vallien has already raised over 500 dollars in the first three days of the project and support continues to come in.
If you would like to learn more go to: http://www.klfy.com/story/26442962/sickle-cell-bottle-water-challenge
Or you can find his original challenge video here: https://www.youtube.com/watch?v=err2fu6_30c
Donations can also be made at http://www.sicklecelldisease.org/
This week in Saudi Arabia the MENAFN, the Middle East North Africa Financial Network, Arab News Network reported that sickle cell anemia had killed 470 people a year in just one hospital alone. Apparently the Qatif Central Hospital “registered 443 deaths as of a result of seizures due to sickle cell anemia while 27 succumbed to the disease without experiencing these convulsions.”
If there is a silver lining it’s that patients, families and now the public are now showing concern as what the article described as “outrage over the lack of resources available at Qatif Hospital to handle seizures arising from sickle cell disease.”
In an attempt to stop further tragedy a lecture was recently organized on sickle cell in the city around Qatif Hospital. According to MENAFN Abdul Hadi Al-Habib one of the founding members is still trying to acquire a permit to work under official terms.
If you would like to learn more about the story you can follow the link provided: http://www.menafn.com/1093932614/Saudi---Sickle-cell-anemia-kills-470-at-Qatif-hospital-in-one-year
Daily Digest News published an article this week examining a “rapid, low-cost test for sickle cell anemia,” this story was published on the second of September and has some interesting details. It was explained that Harvard University researchers attempted to address major hurdles in sickle cell management.
The initial reason the research is being done is because according to the research team “there is a lack of rapid, low cost diagnostic tests that can be done reliably in developing countries.” Because of this out of the approximate 300,000 African children born with sickle “only 50 percent of those children under the age of five will live without diagnosis.”
The test uses a blood sample from a patient and can provide a yes or no answer in roughly 12 minutes. The device would cost 50 cents and as of right now has a high success rate. According to Daily Digest when the tests were conducted “the tests sensitivity was 91 percent, while the tests ability to exclude healthy patient samples was 88 percent.” This is all good news but it was that it is still “a ways off for human use.”
If you would like to learn more just click on the link: http://dailydigestnews.com/2014/09/rapid-low-cost-test-for-sickle-cell-anemia-will-likely-save-lives-in-the-developing-world/
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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