During Sickle Cell Awareness Month make a pledge to start a conversation with co-workers, neighbors and friends about the importance of knowing their sickle cell status.
Statistics on Sickle Cell Disease continue to rise because no one IS willing to start a conversation. How many people do you know have talked about starting a family, but never considered the importance of knowing their Sickle Cell status?
Many states now require children to be screened at birth for Sickle Cell disease but as adults, no one remembers or considers the importance of knowing if they carry the Sickle Cell trait?
If both the mother and father have the Sickle Cell trait, they run the risk of having a child born with Sickle Cell. This is not to put blame on anyone, but rather encourage our community to get educated about SCD.
The Jewish community lowered statistics on Tay-Sachs disease by 95% through vigilant screening programs and a commitment to educate people. Their plan enlisted the support and infrastructure of the Jewish community to host screenings at synagogues and community centers. The support of Rabbi’s was also a big factor in the success of their efforts.
It is our goal to understand why African American and Hispanic communities are unwilling to do the same. How can the Sickle Cell Community obtain support from churches and ministers, civic organizations and the medical community to get everyone to check their Sickle Cell status?
It is so important to start conversations about Sickle Cell disease so that future generations will never have to worry about ” breaking the Cycle.”
Tell us what you think. Read the article about how the Jewish community beat Tay-Sachs disease and let us know if you think we can do the same for Sickle Cell Disease ?
World Sickle Cell Day is on 19th of June. Wearing red for sickle cell day was established by the United Nations General Assembly in 2008, to raise awareness about the sickle cell disease globally. Sickle cell affects us all directly or indirectly and it has affected and continues to affect many families who have lost family members as a result of the condition. Contrary to common knowledge, people in other countries are also affected like India, Saudi Arabia, Turkey, Arabic Peninsula, Brazil, Surinam, Guiana, Southern Italy, Greece. Studies have shown that Nigeria has the largest population of people with Sickle Cell Disease in the world, and with over 150,000 Nigerian babies born with sickle cell every year.
With proper care and treatment, persons with Sickle Cell can lead a relatively good quality life.
It is important that everyone knows their status before starting a family.
Sickle Cell Conferences and Events
The Sickle Cell Disease (SCD) Program at Children’s National invites you to the 7th Annual Family Education Symposium on “Living Well with Sickle Cell”.
Saturday, October 29, 2016 11:30 AM – 4:30 PM
Sheikh Zayed Campus for Advanced Children’s Medicine Children’s National Health System 111 Michigan Ave NW, 2nd Floor, Auditorium
Washington, DC, 20010
This year’s symposium will focus on helping patients and their families manage sickle cell disease while living life to the fullest.
In 2000, Congress passed the Minority Health and Health Disparities Research and Education Act (P.L. 106–525) establishing National Institutes of Health’s (NIH) National Center on Minority Health and Health Disparities (NCMHD; recently renamed as National Institute on Minority Health and Health Disparities, NIMHD) and charged the center with administering special grant programs focusing on disparities, coordinating minority health disparities research across NIH Institutes, and spearheading the development of an NIH-wide Strategic Plan on health disparities. This effort resulted in unprecedented developments, including 27 NIH Institutes and Centers developing individual strategic agendas to eliminate health disparities. Some of these agendas recognized the importance of disparities in pain care.
At about the same time, the 106th United States Congress passed Title VI, Section 1603, of H.R. 3244 declaring the era starting 2000 as the “Decade of Pain Control and Research”[1,2]. Subsequent high-profile pain initiatives included the Veterans Pain Care Act of 2008 (H.R. 6122), Military Pain Care Act of 2008 (H.R. 5465), and the National Pain Care Policy Act of 2009 (H.R. 756/S.660), provisions from which were included in the Affordable Care Act (ACA) signed in to law by President Obama in March 2010 . These high-profile initiatives placed pain on the national agenda as a major public health problem—one with real social and fiscal consequences. The problem of pain cuts across disease entities and treatment settings. According to recent estimates, 116 million American adults suffer from chronic pain; pain remains the principal reason for which people seek medical care [4,5]. Chronic pain is strongly associated with societal costs measured in terms of disability, poor quality of life, relational problems, lost income and productivity, and higher health care utilization including longer hospital stay, emergency room visits, and unplanned clinic visits. The burden to Americans are reflected in an enormous annual expenditure that ranges $560–$635 billion in direct and indirect costs —a marked increase from the previously estimated cost of $100 billion  and an estimated cost of employees’ chronic pain to businesses of $61 billion . Despite chronic pain’s concerning socioeconomic impact, many aspects of pain care, training, and research remain grossly under-resourced [8,9]. Only less than 1% of the NIH research budget is invested in pain and symptom management research  (Box 1).
Please click on link below for full article!
It’s World Sickle Cell Day, and we’re taking a look at the chronic pain and regular hospitalizations that are the reality for many suffering from sickle cell disease.
ROCHESTER, N.Y. — With sickle cell anemia, it’s never just one kind of pain.
Sometimes it’s a vicious ambush, fast and pulsating. Sometimes it settles in slowly and stays for days, throbbing deep in the bones.
Sometimes the pain is in one spot. Sometimes it’s in three. Sometimes it’s everywhere, hundreds of knives, jabbing and cutting from head to toe, grinding down the body and foreclosing on any hope for the future.
“It’s the worst feeling in the world,” said Stephanie Ramos of Irondequoit. “It’s like your body is attacking its own self. Beating up on its own self. … It’s a horrible disease. I hate it.”
Ramos knows sickle cell anemia well. She was born with it 25 years ago. Doctors told her mother then that she would be lucky to reach adulthood; each birthday was a celebration and, quietly, a foreboding.
What would the next year bring? How many crises, how many trips to the hospital? How much more to be endured, and for how much longer?
It’s a disease of pain, and three years ago, Ramos was exhausted by it.
Wixon: Sickle cell disease can’t hold back Lincoln’s Tafari Witter through sporting, academic endeavors
Tafari Witter is near midcourt, bent forward, tugging on the bottom of his shorts, trying to catch his breath. A substitute is headed to the scorer’s table, but Witter looks over to the sidelines and, with a wave of his hand, indicates he’s not leaving the game.
It might be the only time that Lincoln’s starting point guard doesn’t have his priorities straight.
Witter is a razor-sharp student who is on track to be valedictorian of Lincoln’s Class of 2015. He loves Advanced Placement Calculus BC, is part of the Dallas ISD’s Future Leaders Program and in the fall will attend Texas, where he eventually wants to get a master’s degree in business administration.
NBA point guard Derrick Rose is among the people who inspire him, but so is a star from a very different arena: theoretical physicist Stephen Hawking.
Lincoln coach Cedric Patterson smiles when he hears that.
“He’s a unique kid,” Patterson said.
Witter is so unique, and interesting, and engaging, it’s hard to squeeze his sickle cell disease into the conversation. And he likes it that way.
African American Blood Drive for Sickle Cell Disease Awareness
Although people with sickle cell anemia are always in need of blood donations, we focus on awareness each February – “African American (Black) History Month” and September – “Sickle Cell Month”
Most Blood Donor Centers are by appointment so, please contact them by phone and set up yours. Also, ask them if you can get names and phone numbers of people from your church, job, neighborhood, etc. on a commitment sign up sheet, can you fax the sign up sheet(s) directly to them and if they will call the donors and set up their appointments.
As African Americans, we need African American blood because it is the best match for these patients. If the blood is not a very close match, the patient may reject the transfusion and it could be fatal. Presently, only 5% of African Americans donate blood and it is just not enough. People with the sickle cell trait can not help a person with sickle cell disease, but we can help someone else!
Most children with sickle cell disease will need at least one blood transfusion before the age of 11. For most surgeries (major or minor), a transfusion is necessary and more often today children, teens and adults are receiving a blood transfusion every two to four weeks.
For more information or other ways you can assist, call:
Your Local: Children’s Hospital Sickle Cell Clinic or Sickle Cell Foundation
Re-post from Sickle Cell Information Center website – http://scinfo.org/patients-and-families-other-resources/donate-blood-for-sickle-cell-patients
Blood Donation Web Links
Sickle Cell Information – Why give Blood at Please Give Blood. org http://www.pleasegiveblood.org/sickle.htm
American National Red Cross headquarters in Washington, D.C.
Giving Blood or Giving Bone Marrow
American Association of Blood Banks (AABB) at http://www.aabb.org/
National Marrow Donor Program (NMDP) at http://WWW.Marrow.org/
The International Red Cross Movement
International Committee of the Red Cross (ICRC) at http://www.icrc.org/
International Federation of Red Cross and Red Crescent Societies at http://www.ifrc.org/
Sickle Cell Information Center Web Links
- Bone Marrow and Stem Cell Transplant Resources
- Stroke Prevention and Trans Cranial Doppler -TCD Screening
- TCD Patient Information for handouts
- Chelation Therapy for Iron Overload
- Visit our Chelation Conference
- Chelation Education Coloring book
- How to do Chelation Therapy
- STARS Clinic for stroke prevention
Dr. M. Dawn Nelson, Ph.D. is an Associate Professor of Audiology at Central Michigan University. She has an 18 year old daughter with Sickle Cell Disease SS. Dr. Nelson is currently directing research studying the association between dizziness/balance and hearing problems and Sickle Cell Disease.
Dr. Nelson attended a Sickle Cell conference at the FDA (February 7, 2014) where many persons with Sickle Cell Disease expressed interest in research related to hearing loss. Since then, she has been contacted by the FDA who reported many individuals from the conference had been contacting FDA, interested in being involved in a research study, which has now been developed. This research survey has received the appropriate University Institutional Review Board approval and is ready for distribution.
All Adults Living with Sickle Cell Disease are strongly encouraged to complete a short survey. Your responses to the survey will help Dr. Nelson to evaluate the correlation between Sickle Cell Disease and dizziness/balance and hearing problems. Dr. Nelson is confident that with enough survey completions from sickle cell patients, she can ultimately make a significant contribution towards a better quality of life for the Sickle Cell community. But your completion of this important survey, as soon as possible, is necessary in order to be successful.
Please find below the email and Facebook links to the survey
UIC physicians have cured 12 adult patients of sickle cell disease using stem cell transplantation from healthy, tissue-matched siblings.
The transplants at UI Health were the first performed outside the National Institutes of Health campus in Maryland, where the procedure was developed.
Because the technique eliminates the need for chemotherapy to prepare the patient to receive the transplanted cells, it offers the prospect of a cure for tens of thousands of adults with sickle cell disease.
About 90 percent of the approximately 450 patients who have received stem cell transplants for sickle cell disease have been children. Chemotherapy was considered too risky for adult patients, who are often more weakened than children by the disease.
“Adults with sickle cell disease are now living on average until about age 50 with blood transfusions and drugs to help with pain crises, but their quality of life can be very low,” says Damiano Rondelli, chief of hematology/oncology and director of the blood and marrow transplant program at UI Health.
“Now, with this chemotherapy-free transplant, we are curing adults with sickle cell disease, and we see that their quality of life improves vastly within just one month of the transplant,” said Rondelli, Michael Reese professor of hematology in the College of Medicine. “They are able to go back to school, go back to work, and can experience life without pain.”