By Sean Marshall
This week had some interesting developments with a new possible treatment for sickle cell disease emerging out of Nigeria. According to an article posted on The Guardian's website British and Nigerian researchers have been collaborating their efforts in developing a herbal treatment to sickle cell anemia with the aid of the pigeon pea plant.
It was explained that the plant's leaf extracts could use plant based enzymes to combat and even balance out defects brought on by sickle cell disease. The plant would have to be taken orally on a regular basis but this is big news for the sickle cell community.
This is in no way a permanent cure but it could lead to reduced pain and longer less painful lives of those suffering from sickle cell anemia. The Guardian's article also pointed out that further research is being done combining the pigeon pea plant with other herbal remedies.
Links to the story can be found here:
Other news updates this week include a new form of cancer treating drug could help battle blood diseases such as sickle cell anima. NewsMedica.com explained that the drug repamycin, a drug used to slow cancer growth, can in fact "deliver a therapeutic dose of genes to the blood steam cells while preserving stem cell functions."
This means the drug according to NewsMedia.com could "lead to more effective and affordable long term treatment for blood cell disorders."
What's interesting is seeing both the herbal and non-herbal ways the world is treating sickle cell disease. In both articles progress is being made one just in different ways. It will be interesting to follow how both treatments turn out and compare them. Which will turn out more beneficial the herbal or the scientific methods.
If you would like to read the whole article just head to the link below:
To follow up on a previous story the testing of medical marijuana for the treatment of sickle cell disease will begin next month. According to MedicalJane.com a leading medical marijuana activism and treatment web site the medical testing will begin July 2015 and will test the effects that medicinal marijuana has on the pain caused by sickle cell anemia. it was explained that "During the clinical trials, the researchers will test the effects of vaporized cannabis in 35 sickle cell patients."
It was noted that according to the doctors conducting the testing that it could "potentially lead to sickle cell disease being added to Minnesota's list of qualifying conditions to receive pain treatment and aid." As of right now it does not but the study could change all that.
Of course if you'd like to read the article for yourself head to the link below:
If you have any comments questions or concerns send an email to:
By Sean Marshall
Biggest news of the week was that Thursday June 19th was world Sickle Cell day. The day itself managed to spread news about the disease on both global and local levels. Many different news agencies from across the web began spreading the word about the seriousness of sickle cell disease.
Many of the articles posted on various news sites explained that “around 5% of the world’s population carry the sickle cell trait.” While other news agencies reported on the much more recent Nigerian statistics that "sickle cell anemia is about 20 per 1,000 births each year.” Despite attempts at news coverage this world Sickle Cell day proved that the media is willing to pay attention just not for very long or enough to fact check.
The important thing is that the disease itself is getting coverage. Most if not all articles about Sickle Cell Awareness day mentioned the cause of the disease and why so many individuals misunderstand sickle cell disease. From lack of awareness to the fact that in Canada sickle cell is treated as a form of cancer.
This is all great stuff but unfortunately many articles, videos and other news feeds barely touched on the suffering of those who have sickle cell disease. There
were of course the exceptions like one particular article on Proplayerinsider.com in which readers are given the intricate details of the life of the an ex-pro athlete daughter who suffers from sickle cell. The article itself was moving as it explained the amount of pain children with sickle cell disease go through to the frustration of parents who don’t fully know how to help their child. The interesting turn the article takes is worth the read and in today"s media sometimes these perspectives are lost.
If you would like to learn more there are links to the mentioned articles below.
Other news this week includes a story out of Houston where a doctor has made breakthroughs in sickle cell disease treatment.
It is explained in MyFoxHuoston.com’s article that a Dr. Modupe Idowu is working with the University of Texas Health Medical School on sickle cell research. The pair have discovered that individuals who have sickle cell disease “produce more substance which reduces the amount of oxygen in a person’s blood cells.”
This is one of the factors that cause problems for those suffering from sickle cell disease. The article also went on to explain that “currently there is only one drug that is FDA approved for sickle cell disease but it comes with many side effects.” Ultimately the drug seems to be a double edged sword. Helping relive pain
and inflammation but causing other problems later in life.
There was also mention of a patient of Dr. Modupe and her struggle over sickle cell but unfortunately there was little mention of how well the drug worked. There was mention that it helps with her pain tolerance but not much more after that. Also the drug in question was not named. However taking the good with the bad any advancement in the treatment of sickle cell disease is always a step in the right direction.
Again links to the full articles can be found below the summaries.
If you have any concerns, questions, comments or suggestions feel free to email us at: firstname.lastname@example.org
Sickle Cell Disease News and commentary: Week One
By Sean Marshall
This is The Sickle In Me’s officail news blog. This blog will give weekly updates on all sickle cell disease related news and upcoming breakthroughs in medical treatments. If it relates to sickle cell disease and has surfaced in the media this blog will be here to summarises, securitize and keep readers informed.
This week’s top news story comes from an article found on Minnesota Today website. The article itself has outlined that the University of Minnesota where a group of researchers are testing the effects of medical marijuana for the treatment of chronic pain associated with sickle cell disease.
However the testing on human patients is illegal in the state of Minnesota due to the laws regarding marijuana. This means the research team as well as the human test subjects must relocate to California were the use of medical marijuana is legal.
The reason this is so big is that one of the main symptoms of sickle cell disease is fatigue and pain. These two issues are often treated with opiates such as morphine which is highly addictive and causes further problems later in life. According to pain expert Donald Simone explains morphine and other pain killers are "problematic" Other officials have commented that there isn’t an accurate measurement of pain causing many patients to receive incorrect dosages of drugs.
According to recent media coverage the recent findings have many ramifications. If the testing is proven a success then according then individuals suffering from sickle cell disease could qualify for medical cannabis. This would but people who suffer from sickle cell with the likes of cancer patients and those who have HIV/AIDS. The use of medical marijuana has been proven in mice to relive the pain more effective then morphine and generally has far less addictive properties.
The tests are not finished yet but researchers are staying optimistic. Ultimately the study itself has shed light on the suffering of those who have sickle cell anemia. This would then lead to more legitimacy and recognition of sickle cell disease and that is defiantly a good thing.
There is a link to the original article below for further elaboration. Feel free to leave any comments questions or concerns in the comments section below.
Link to article:
Other big news for sickle cell awareness is the astonishing statistics out of Nigeria. According to Codewit World News 150,000 babies are born with sickle cell yearly in the country of Nigeria. The Sickle Cell Foundation Nigeria or SCFN for short has reported that Nigeria has the highest number of sickle cell disorder in the world with 150,000 new births every year.
If Codewit World News is accurate then this is proof that sickle cell disease has to be thrust in the public eye. The article goes on to say that "Out of the 500,000 children born with a haemoglobin disorder in Nigeria, 70 per cent of them are born with sickle cell disease."
It also explains that factors like ignorance, lack of access to proper healthcare and poverty is causing "80 per cent of children with sickle cell disease to die each year."
The article ended by explaining that the more media coverage the disease gets the easier it will be for people to understand and combat sickle cell disease.
This problem may be going on halfway across the world but it is an important example of what is going on right here in Canada. The lack of education on how a person contracts sickle cell disease and how to properly treat it are all issues that this country struggles with. The only difference is that there are more wide scale outbreaks in Nigeria as of this moment then in Canada.
Again if there are any concerns questions or even ideas for later topics feel free to comment in the section below.
Link to article:
World Sickle Cell Day and Sickle Cell Disease Awareness Month are NOT the same.
World Sickle Cell Day is celebrated in June, is actually on June 19th of each month, is recognized globally and was created by the United Nations by resolution. People will celebrate it on different days and in different ways, because the next time June 19th will be on a Saturday is in 2021!
In the United States, Sickle Cell Disease Awareness Month is in September, is not recognized in every state, and is not recognized globally! It is created by State representatives voting to recognize it in their individual state.
Sickle Cell awareness not recognized by all countries, globally.
The World Health Organization (WHO) has started work to promote a world wide agenda to address hemoglobin dysfunctions.
WHO has made a commitment to:
· Recognize that sickle cell disease is a major health issue.
· Increase awareness of the world community regarding sickle cell disease.
· Eliminate harmful and wrong prejudices associated with sickle cell disease.
· Urges member countries where sickle cell disease is a public health problem to establish health programs at the national level and operate specialized centers for sickle cell disease and facilitate access to treatment.
· Promote satisfactory access to medical services to people affected with sickle cell disease.
· Provide technical support to all countries to prevent and manage sickle cell disease.
· Promote and help research to improve the lives of people affected with sickle cell disease.
The World Sickle Cell day is celebrated across the globe with special emphasis in African Nations and Asia. The celebrations include a press, media campaigns, music shows, cultural activities, and talk shows.
The main emphasis is hence on educating medical professionals, care givers, and associated personnel about prevention, research, and resources to minimize the complications due to sickle cell disease. Hence June 19th is devoted mainly to spread awareness, through talks, seminars, pamphlets, literature and consultations.
ALWAYS remember that this is NOT a "ME" thing, it is a "WE: thing!!!
According to TMZ, Cahron “JayAre” Childs from the rap group Cali Swag District died Friday as the result of complications from sickle cell anemia.
MTV reported that Jay suffered from sickle cell and was hospitalized Thursday. Hours later he reportedly went into into cardiac arrest and passed away.
Surviving group member Smoove Da General took to his social media to discuss losing yet another group member and close friend saying,
“For those who speak or act before they think or know anything Jayare was born with sickle cell & he had a seizure in his sleep yesterday afternoon on the couch at his moms house the paramedics rushed him to the hospital and attempted to revive him over and over he was stable up until today at 5:15 today where he went into his last cardiac arrest and left us …this was my everyday nigg* I literally saw you or talked to you everyday bro and who would have known yesterday morning would have been my last time speaking to u …I can’t believe your gone I can’t believe we have to deal with this again …I jus can’t believe it ..your birthday is in 6 days ..I wish I could slow down time because I don’t think there will be any celebrating on the 12th I’m torn ..I’m confused …I’m hurt ..I’m lost…I’m …………..rest in peace my brother from another Cahron Shemar Childs ..I love you bro #why ???????”
Sadly, JayAre is the second group member to pass away in the last few years. Group member M-Bone passed in 2011.
Our Prayers and Condolences to Jayare family and Friends as we understand the struggle of Sickle Cell Anemia oh to well.
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