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Author: calovel

Sickle Cell Newsletter for July 2016

News   Up to $25 million in Funding for Management of Care Transitions for Emerging Adults with Sickle Cell Disease Thank you again for participating in the “Management of Sickle Cell Disease” workshop hosted by the Patient-Centered Outcomes Research Institute (PCORI) on March 7, 2016. Based on the results of the meeting, we would like […]

Mobile Apps for Sickle Cell Patients

  Sickle Cell Services By Bedford, Louis & Ellicott, LLC The Sickle Cell Disease Association of America, Inc. (SCDAA) has released The Sickle Cell Services Mobile App. It provides members of the SCD community access to a database of medical and support services, national news, live message feed from SCDAA and also incorporates a messaging […]

City Spotlight: Oakland, California

Shining the sickle cell spotlight on Oakland, California, reveals a rich history of activism, medicine, and commitment that began in the 1960’s and continues into the twenty-first century. In 2016, the Northern California Comprehensive Sickle Cell Center at Children’s Hospital & Research Center Oakland (now UCSF Benioff Children’s Hospital Oakland) remains the epi-center for sickle cell treatment and research serving the San Francisco Bay area and surrounding region in Northern California.

FDA Campaign for Clinical Trial Diversity

FDA is releasing six public service announcements, a blog, and an infographic to encourage people of diverse races and ethnicities to participate in clinical trials.

You can be a #ClinicalTrialsChampion by sharing these resources far and wide! Spread the word: a person’s race or ethnicity can affect how his or her body responds to medicine.

Addiction Guide

Addiction Guide was created to provide the most comprehensive up-to-date information about various addictions and how to overcome them. We are not a treatment center, but through our network of centers and connections across the country we can provide outlets for people seeking help. We are a diverse team of recovering addicts, healthcare professionals, and patient advocates who can provide you with tools and advice to help you regain control of your life. By increasing awareness and including this resource on your page, millions of Americans across the globe will have the best opportunity to find the right treatment for them and improve their quality of life.

Our mission at Addiction Guide is to serve you. By spreading awareness, more and more people can become educated about their treatment options. We understand that there is no perfect formula for recovery. Everyone’s journey is different but we firmly believe that with the right help, a personalized recovery plan can be created for everyone. Visit www.addictionguide.com to learn more.

Early History of Sickle Cell Disease

To the left is an image of Africanus Horton, also known as James Beale. He was born in 1835 in Gloucester Village, Sierra Leone, to parents of Igbo descent. The British chose Dr. Horton to be trained as the army medical officer for their post in West Africa. He began his training at the University […]

What to Know About Low THC (Cannabis) Oil Use in Georgia

In April 2015, Georgia Gov. Nathan Deal signed into law the Haleigh’s Hope Act. This law legalizes the medical use of low-THC oil (cannabidiol or cannabis oil) for alternative treatment of certain approved medical conditions in children and adults, including sickle cell. For sickle cell patients, the diagnosis must be severe or end stage, as determined by the physician.

Visit the Children’s Healthcare of Atlanta (http://www.choa.org/Patients-Families/During-Visit/Childrens-Hospital-Patient-Safety/Medicine-Safety/Low-THC-Cannabis-Oil) and/or the Georgia Department of Public Health (http://dph.georgia.gov/low-thc-oil-registry) websites to learn more about low THC oil.

Sickle Cell Newsletter for June 2016

News Sickle Cell in Focus Conference June 2 & 3, 2016 Natcher Conference Center (Building 45) National Institutes of Health 45 Center Drive Bethesda, MD  20892 Sickle Cell in Focus (SCiF) is an annual two-day intensive and educational conference co-hosted by the National Heart, Lung and Blood Institutes (NHLBI) in Washington, DC and the South […]

Sickle Cell Newsletter for April 2016

News Scientists uncover new way to grow rare life-saving blood stem cells Enhanced numbers of stem cells for transplantation possible https://www.sciencedaily.com/releases/2016/04/160427150323.htm A protein called Musashi-2 regulates the function and development of important blood stem cells. This knowledge provides new strategies that can be used to control the growth of these cells — cells that can […]

Financial Aid for Minority Students: Resource List from OnlineSchools.org

In recent years, a nationwide emphasis on the importance of diversity (particularly on college campuses) has generated many scholarships and grants for students who belong to underrepresented minority groups. OnlineSchools.org’s comprehensive scholarship list includes financial aid opportunities exclusively reserved for African-Americans, Hispanics, women, and other specific minority groups, as well as more generalized awards that are made available to applicants belonging to any underrepresented demographic.  Read more…

CHECK – Medicaid Care Coordination for Families with Sickle Cell

CHECK’s mission is to improve the coordination of health care for children and young adults with chronic conditions by engaging and collaborating with them, their families, and their communities to provide tailored disease specific programs and to reduce their barriers to accessing medical, behavioral, and social services.  CHECK provides modules on youth and parent sickle cell education.  CHECK was developed for the Centers for Medicare and Medicaid Innovations CHECK project, copyright University of Illinois Board of Trustees.  Read more…

City Spotlight: Atlanta, Georgia

Atlanta has long been a national center for the treatment of sickle cell disease and for cutting edge research on this blood disorder that affects more than 100,000 patients in the United States and millions worldwide.  In 1978 Emory University Hospital recruited James R. Eckman, MD to come to Atlanta to start and direct a new center for sickle cell disease at Grady Memorial Hospital. The first 24-hour clinic in the world devoted to sickle cell patients, in 2016, the Georgia Comprehensive Sickle Cell Center at Grady has a staff of thirty, sponsors research and has treated thousands of patients.

Sickle Cell Newsletter for March 2016

Launch of the New SCInfo.org Website The Sickle Cell Information Center website, www.scinfo.org began in 1997, shortly after internet communication took off. Founded by James R. Eckman, MD, Professor of Hematology and Medical Oncology at the Winship Cancer Institute and Professor of Medicine and Adjunct Professor of Pediatrics in Medical Genetics at Emory University School […]

Uncertain Suffering (2009)

In a wide ranging analysis that moves from individual patient cases to the compassionate yet distanced professionalism of health care specialists to the level of national policy, Carolyn Moxley Rouse uncovers the cultural assumptions that shape the quality and delivery of care for sickle cell patients. She reveals a clinical world fraught with uncertainties over how to treat black patients given resource limitations and ambivalence. Learn more and buy the book on Amazon.

Managing Sickle Cell Disease: In Low-Income Families (2003)

Shirley A. Hill examines how low-income African American mothers with children suffering from this hereditary, incurable, and chronically painful disease, react to the diagnosis and manage their family’s health care.  Learn more and purchase the book on Amazon.

Backdoor to Eugenics (2003)

Considered a classic in the field, Troy Duster’s Backdoor to Eugenics was a groundbreaking book that grappled with the social and political implications of the new genetic technologies. Completely updated and revised, this work will be welcomed back into print as we struggle to understand the pros and cons of prenatal detection of birth defects; gene therapies; growth hormones; and substitute genetic answers to problems linked with such groups as Jews, Scandanavians, Native American, Arabs and African Americans. Duster’s book has never been more timely.  Learn more and purchase the book on Amazon.

Parent’s Guide to Cord Blood Foundation

Cord blood treats over 80 diseases including leukemia and lymphoma. Donations are painless and are being used to save the lives of children and adults around the world. To learn more and download a free guide, click here.

William Bratton Fights Sickle Cell Anemia as He Battles for Playing Time for the Rockets

It usually begins as a pain in his lower back. Next it moves to his joints, creeping slowly into his elbows and knees. By then, William Bratton knows it’s coming. And there is nothing he can do to stop it. All there is left to do is get to the hospital as quickly as possible and hope it’s not as bad as the last time.

In the jargon of sufferers of sickle cell diseases, it’s called a “crisis.” For Bratton and thousands like him, it means only one thing: excruciating pain.

The Power of Information: A Letter from Michael Cobb

My name is Michael Cobb and I have sickle cell anemia. In the beginning I did not let this bother me. As a kid I still did the things other kid did, But not realizing that I could not do them at the same extent as other Children. This lead to many crises. Not wanting this to be an excuse for me not to try, I still tried and like ever so often I went into a crisis. I even tried the armed services. In my fifth week of boot camp running the Mile and a half I then again went into another crisis. Feeling the pain and humiliation of once again my body not giving way to let me do what I wanted to do. This was the experience that would change my life forever.

Managing the Pain: Inez C. Hardin

I retired on 30 September 1998 from a job where I had worked for 18 years, after that time I babysat my two grandchildren for two years while their mother worked. I sometimes babysat the children three or four times a week.  Recently, they went on vacation and I now have lots of time on my hands. So I decided that I would get as much information as I possibly can about sickle cell disease, which I have suffered from all of my life, I will be 69 years old on 26 July 2000.

Ola’s Story

Fortunately or unfortunately – or both, I am one of the over one million Nigerians afflicted with sickle cell disease. I have written a story which details my on-going grappling with the disease, the attempts to get cured or alleviate suffering through various orthodox and unorthodox means including urine and water fasts. It also tells of my growing up in a polygamous family ruled by an authoritarian father; of smoking and alcohol abuse in early life; of being sexually molested at the age of seven of difficulties at home and school and work caused by health impairment; and of my singular experiences which resulted in my repudiation of religious orthodoxy. At another level, it is the story of other sicklers and ‘normals’ in my extended family.

Good Medical Care and Strong Family Support Can Go a Long Way: Letter from Debbie Thomas

The one overall theme I am reading from this site is the importance of good medical care and strong family support.

I am a 37 year old woman with SC disease. My story is very similar to those posted here. It breaks my heart to see people with Sickle Cell living their life as if they don’t have a life. I try to educate the parents I come in contact with but are often looked at as if I don’t know what I am talking about.

The Psychological Impact of Sickle Cell: Fola Ogunnowo

I was born in Nigeria but reside in England. I discovered I have sickle cell disease at the age of 13.Before; I was always in and out of the hospital. No one in my family thought of this disease since I’m only the person in my whole family. Before coming to England, I’ve suffered unthinkable and unbearable pains in my life, pains no one can ever understands except the person suffering from it.

Monica’s Struggle with Pain Medication

I’m 23yrs. old with SC. I was diagnosed with Sickle Cell disease at 18 months. I have always been very stubborn with taking care of myself as far as drinking plenty of fluids and taking folic acid on an everyday basis.

My mother always pushes me too drink water even now as an adult woman living in my own house. I consider myself as being a very weak individual. My crises have gotten less frequent over the past 2 years. Sadly but not ashamed to say I have become very addicted to my pain medication, it first started when I became pregnant Nov. 2001.

Sheila Holds on to Hope

Greetings from California,

My name is Sheila Marchbanks, I’m a 46 years old and I am living a very full though sometimes challenged life. I was diagnosed with Sickle Cell Disease as a child. The initial diagnosis was that I carried the trait, later I was incorrectly diagnosed with Sickle Cell Anemia, and as an young adult correctly diagnosed with Sickle Cell Beta Thalassemia.  Throughout my life I have lived with denial (by myself as well as family members), with pain, with confusion, with erroneous medical information, and with hope.

Kennedy’s Story

When we first went to the hematologist (St. Vincent Hospital) my husband and I were never given a straight answer on whether our daughter had the disease or had the trait. This is when we took our daughter to Riley Hospital for Children to find out what was really wrong with her.