By Sean Marshall
Nigeria ranks number one in the world for confirmed cases of sickle cell disease. This story was covered by Leadership, one of Nigeria's top newspapers, and explained that Dr. Khaliru Alhassan the Supervising Minister of Health commented that “Nigeria has the highest prevalence of Sickle Cell Disease in the world with 40 million Nigerians carrying the genes.” The information is explained that that “the country has an infant death rate of 100,000 annual and sickle cell represents 8% of that.” Despite the number being low it is much lower in other nations. There was other startling information shared in the article not just about Nigerian statistics but world statistics as well. That “100 million people in the world are affected and that 50% of sickle cell deaths are those with the most sever of cases.” Another interesting point that was made is that “sickle cell is among the top ten communicable disease causing significant deaths.” There was good news the Federal Ministry of Health in collaboration with experts planning on submitting an article that will guide prevention and control of sickle cell disease. These guidelines could include what was outlined by the article as “management of specific clinical problems associated with sickle cell disease and protocols for various therapeutic procedures. It will also facilitate uniformity and standardization of care across different disciplines.” If you would like to learn more about the issue you can click the link below: http://leadership.ng/news/392085/nigeria-ranks-first-sickle-cell-disease-burden-worldwide-40m-cases Good news for the city of New Delhi medicine this week. According to The Times Of India, a news agency mainly focusing on Delhi and New Delhi news, doctors from a private hospital have “performed a half matching bone marrow transplant on a patient suffering from sickle cell disease.” A four year old boy by the name of Nathan Ekundayo was saved this week by Dr. Gaurav Kharya, senior consultant at Center for Bone Marrow Transplant at BLK Super Specialty Hospital. According to the report Nathan was diagnosed with sickle cell “when he was one year old.” It was explained that over his short life has undergone “frequent hospitalizations.” But it wasn’t early last week that his condition became serious enough to warrant a surgery. According to the article if the boy had not undergone the transplant “he could have soon died.” As of right now Nathan is alive and recovering from a life saving surgery. If you would like to read the article you can find it here: http://timesofindia.indiatimes.com/city/delhi/Half-match-marrow-transplant-saves-kid/articleshow/45278597.cms If you have any comments questions or concerns email us at [email protected]
0 Comments
By Sean Marshall
There were an abundance of medical updates in the media world this week and one good piece of news involved the children. Children with sickle cell disease according to health.usnews.com have much to celebrate. “A clinical trial of hydroxyurea therapy for children with sickle cell disease has been halted a year early.” This is all due to the results showing that it is a safe and effective way to manage sickle cell disease, specifically by reducing the risk of stroke. The drug itself is put in place to “reduce the number of abnormally shaped red blood cells.” By doing this the risk for stoke significantly drops. The test results proved the drug was effective when researchers compared “monthly blood transfusions with daily hydroxyurea pills among children with sickle cell.” What makes this important, besides the life saving properties is that the research was conducted “at 25 medical centers in the United States and Canada.” This shows commitment from all of North America to combat sickle cell disease. This proves that there are many individuals suffering from sickle cell and North American institutions are finally acting. Lastly the article explained that "this critical research finding opens the door to more treatment options for clinicians trying to prevent strokes in children living with the sickle cell disease," If you want more information go to the link here: http://health.usnews.com/health-news/articles/2014/11/21/sickle-cell-anemia-treatment-so-successful-in-kids-that-trial-is-halted In other medical news a study about zinc showed it can benefit those who suffer from sickle cell anemia. The article found on yourhealthmag.com it mainly deals with zinc and why it's important to humans but there was a small section highlighting recent benefits it can have on those suffering from sickle cell anemia. It was explained that zinc "can benefit patients with sickle cell anemia who suffer from delayed growth and development.” It continued on by explaining about a study led by Dr. Babette S. Zemel of the Children's Hospital of Philadelphia. The study showed “that children with sickle cell anemia experience increased growth and development compared to a group not given zinc supplements.” Lastly the article mentioned there is also speculation that “sickle cell anemia is associated with zinc deficiency, according to livestrong.com.” There really isn't much more about sickle cell in the article but if you would like to learn more about zinc click the link here: http://www.youthhealthmag.com/articles/2408/20141117/zinc-benefits-in-growth-and-development-can-be-helped-by-this-mineral.htm The last mentionable medical news piece comes from streetinsider.com. This article covered the announcement that Mast Therapeutics, Inc. a clinical-stage biopharmaceutical company, t announced that it will be presenting data from an ex vivostudy ,its lead product candidate, at the 56th Annual Meeting of the American Society of Hematology (ASH) taking place December 6 – 9, 2014 in San Francisco, California. It was explained that their new program is all about the "Pro-coagulant Actions of Circulating Microparticles in Sickle Cell Anemia.” The concept will be presented as part of the Oral and Poster Abstracts Program on Sunday December 7, 2014 in Session 321: Blood Coagulation and Fibrinolytic Factors. The study explained that the “supplementation of MST-188 to blood samples collected from healthy normal individuals, sickle cell anemia (SCA) patients and sepsis associated coagulopathy (SAC) patients resulted in significant decrease in thrombin generation and marked decrease of functioning micro particles.” Basically what this all means is that the study in question has figured out why and how individual with sickle cell go though pain on a micro-biological level and the next step will be the production of processes, mainly drug based, to stop this pain from continuing. If you want to know more click here: http://www.streetinsider.com/Corporate+News/Mast+Therapeutics,+Inc.+(MSTX)+to+Present+MST-188+Data+at+ASH/10020460.html If you have any questions comments or concerns email us at [email protected] By Sean Marshall
New medical news this week. According to medical news today, an online medical news site, African Americans individuals carrying the sickle cell blood disorder trait are at high risk of chronic kidney disease. It was explained that African Americans that that carry the sickle cell trait have a risk factor of 20.7 percent for chronic kidney disease It was also explained that “the researchers also found that people with SCT had a faster decline in estimated glomerular filtration rate (eGFR) - the rate at which fluid is filtered through the kidney; 22.6% of those with sickle cell trait experienced eGFR decline, compared with 19% of those without the condition.” Other findings included statistics like “31.8% of people with SCT experienced albuminuria - excess protein in urine that can be a sign of a kidney disorder - compared with 19% of those free of SCT.” The most important part highlighted near then end was the researchers comments on the need for further research and development. If you'd like to read the article go to the link here: http://www.medicalnewstoday.com/articles/285322.php But wait there’s more, the big problem is that as of right now a scientific medical news website is not reveling why individuals wit sickle cell. This issue was actually covered in another article found on Reuters.com. Reuters is actually a business magazine which goes to show that sickle cell awareness is spreading to all different aspects of life yet is still not a properly covered topic. As of right now the article found on reuters.com is explained by Dr. Rakhi Naik of Johns Hopkins University that “even though sickle cell trait has been considered to be relatively benign, it has been known that kidney complications, such as having blood in the urine, was more common in people with sickle cell trait versus people without sickle cell trait,” She went on to better explain why this happens “the theory is that under very highly stressful situations there may be some localized sickling that happens in the kidney that is leading to functional impairment.” So there you have it in order for all questions about chronic kidney disease affecting individuals with sickle cell traits in the media this week . If you would like to get a better understanding of the situation you can find the story here: http://in.reuters.com/article/2014/11/13/us-sickle-cell-kidney-idINKCN0IX2KG20141113 It's best to read both to get an accurate idea of what's happening but if you have to read one go for the second over the first it might not be as official or use as many medical terms but it answers most questions. If you have any comments questions or concerns please email us at [email protected] Kara Martina, B. Sc. Biopsychology
A sensitive subject, given its relation to sexuality, an Ischemic priapism is a condition that male Sickle Cell patients may encounter. This prolonged erection results from lack of adequate blood circulation through the penis resulting in a painful and unwanted condition that may last for more than four hours. Even when stimulation is gone, the irregular shape of sickle cell blood can prevent it from leaving appropriately. It is very important that an Ischemic priapism is diagnosed properly, not mistaken for nonischemic priapisms, a mistake which may alter treatment plans. Without the restoration of arterial inflow to the cavernosal tissue, this sponge-like tissue will be deprived too long of oxygen resulting in interstitial edema, corporal smooth muscle fibrosis, and clinical erectile dysfunction (1).A single prolonged erection may cause these more serious consequences, with alterations at the structural and molecular level in the corpora cavernosa, the tissue necessary for proper erections. Edema of the cavernous tissue and its delicate framework at 4 hours is followed by a stripping of the capillary walls at 24 hours, followed by smooth muscle cell death and transformation into fibroblastic-like cells at 48 hours. These dire changes can lead to progressive fibrosis and erectile dysfunction of the penis in the future. If you or a loved one experiences this condition, treatments include: At home remedies {Beginning/non-severe condition} A cold shower or ice pack may relieve symptoms along with exercise in the form of climbing stairs (2). However, given the unwanted consequences of an Ischemic priapism, seeing your doctor outweighs the convenience of a shower. Medication to take Doctors may administer pain relief via an epidural (3). Also prescription drugs such as Vazculep and Vicodin reduce its pain. You may also receive treatments that are commonly used to treat SCD-related episodes, such as supplemental oxygen or an intravenous solution to keep you hydrated (2). In the hospital Both a combination of draining and injection of alpha-adrenergic sympathomimetic drugs may be administered (1). These drugs mimic the action of the sympathetic nervous system, constricting the blood vessels that carry blood into the penis. This then allows blood vessels that carry blood out of the penis to open.
There are some potential side effects such as headaches, dizziness and high blood pressure, particularly if you already have high blood pressure or heart disease (2). Lastly, surgery may be considered if other treatments aren’t successful. A surgeon may implant a shunt that reroutes blood so that it can move through your penis normally (2). References 1. Bassett, J., Raifer, J. Diagnostic and Therapeutic Options for the Management of Ischemic and Nonischemic Priapism. Rev Urol. 2010 Winter; 12(1): 56–63. 2. Mayo Clinic. (2014). Priapism: Prolonged Erection. Retrieved November 15, 2014 from http://www.mayoclinic.org/diseases-conditions/priapism/basics/treatment/con-20029378 3. UCSF Medical Centre. (2014). Priapism Treatment. Retrieved November 15, 2014 from http://www.ucsfhealth.org/conditions/priapism/treatment.html By Sean Marshall Slow news this week but despite not much surfacing the new sickle cell headlines are just as important as ever. Big news out of business world this week. On the sixth of November fiances.com, a business and technology news site, covered the 56th Annual ASH. The American society of Hematology, or the ASH discussed many topics but according to the article one of the big issues sickle cell data. It was announced that there have been developments for a chemical called GM 1271, This drug that would “increase the ability for chemotherapy to eliminate cancer cells. It may also address problems with blood clotting and other blood blocking diseases.” The article then went on to explain that the drug could also “deal with the issues involving vaso-occlusive crisis in sickle cell disease.” Specifically GM 1271 helped those with sickle cell by adding in and “developing investigational therapy for pain crisis associated with sickle cell disease.” The article also mentioned many other medical issues the meeting, they however did not pertain to sickle cell anemia. If you would like to read the article follow the link: http://www.finances.com/company-news/34171-glycomimetics-e-selectin-and-sickle-cell-data-to-be-highlighted-at-56th-ash-annual-meeting.htm If you would like an in depth definition of GM 1271 click here: http://www.glycomimetics.com/programs-pipeline/gmi-1271/ If you have any comments questions or concerns please email us at [email protected] By Sean Marshall
Interesting news this week from allafrica.com. According to an article published on the 30th of October the Nigerian MTN federation is training genetic counselors nationwide. According to the article the MTN Foundation which is the Corporate Social Responsibility vehicle of Nigeria's leading Information and Communication Technology Company, “has facilitated the training of 336 sickle cell disorder genetic counselors nationwide.” It went on to explain that the Foundation in partnership with the Sickle Cell Foundation of Nigeria “provides training for health caregivers in order to enhance delivery of specialized care in the management of sickle cell disorder in Nigeria.” They then can use this training to better combat sickle cell disease around the content not only saving lives but taking pressure off of other medical facilities that might not be able to treat sickle cell as effectively. Speaking at the graduation ceremony of Batch 17 trainee healthcare counselors comprising medical doctors, nurses and other caregivers, MTNF Director, Dennis Okoro said that, “prevention of the disorder through carrier identification, genetic counseling and prenatal diagnosis, remains the best measure to stem sickle cell anemia.” It was also mentioned by the Chairman of the Sickle Cell Foundation of Nigeria, Prof. Olu Akinyanju, that the training, which is organised biannually, “builds capacity for the management and control of sickle cell disorder, which is a crucial goal of the Foundation in Nigeria.” Lastly it was explained that the “MTNF currently supports sickle cell clinics in Lagos, Edo, Delta and Kano States and provides free drugs and counseling services.” If you would like to visit the main site to get all the details click on the link: http://allafrica.com/stories/201410310818.html Other news this week involved an article from zawya.com this particular online news agency posted an article on the 26th of October outlining the increasing efforts made by the people of Bahrain to to control sickle cell disease. According to the report, “the leading oncologists and hematologist from Bahrain, on the 26th at the Novartis Oncology supported Sickle-Cell disease conference.” The main idea was to share the latest global practices in the management of sickle cell disease. Other aspects covered how many the main team felt about what was going on. Some quotes given included, “our patients are our priority and the conference helped us bring together our collective expertise to highlight the different ways through which we can help them.” While others takled what they had hoped to accomplish in the future. “Increasing efforts are being undertaken by us at the Hereditary Blood Disorder Management Centre to control the rising disease complications through targeted approach and the conference is one of the many such measures being undertaken by us," said Dr. Jaffer Al Tooq - Team Leader, SCD management at Hereditary Blood Disorder Centre at Salmaniya Medical Complex . Ultimatly the article pointed out what the conference saw, which included experts highlighting such topics as “the efforts which are being undertaken to reduce the incidence of SCD in Bahrain and identify various measures through which these efforts can be maximized to achieve better results.” If you would like more information go to the link: http://www.zawya.com/story/Increasing_efforts_are_being_undertaken_by_experts_to_control_Sickle_Cell_Disease_in_Bahrain_providing_hope_for_patients-ZAWYA20141026113652/ If you have any comments questions or concerns email us at [email protected] |
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
Categories
All
|