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- Site Map | -scdaami-
site map Our site is filled with valuable, credible information! You can explore its content here or use our search feature. Home Highlights Coronavirus / COVID-19 Info & Resources Spring E-Newsletter Explore Treatments News & Media Sponsors & Alliances Advocacy & Legislation Locations Detroit Office Contact Us Satellite Offices Map About Us Our History Our Impact Our Board Our Staff Jobs/Careers Services Office and satellite location contacts Our Services Newborn screening Testing and genetic counseling Social work services Career development Public education Summer Camp Covid-19 information Conditions What Is Sickle Cell Disease? Prevalence of Sickle Cell Disease How Do You Inherit Sickle Cell Disease? Explore More In-Depth Information American Society of Hematology Centers for Disease Control National Institutes of Health The Problem with Sickled Cells (video) A Century of Progress A History of Sickle Cell Sickle Cell Trait Sickle Cell Trait Facts Know Your Trait Status Sickle cell trait info from the CDC NCAA Fact Sheet for Student Athletes Testing for sickle cell trait and disease Symptoms & Complicatons Symptoms and Complications Anemia Acute Chest Syndrome Pain Hand-Foot Syndrome Splenic Crisis Infection Stroke Vision Loss More info from the CDC Treatments Feb. 29, 2020 treatment workshop videos Bone marrow and stem cell transplants Medications Penicillin Hydroxyurea Endari Adakveo Oxbryta Transfusions Media News & Multimedia SCDAA-MI Out and About News From Around the Community Patient & caregiver-focused videos Provider-focused sickle cell videos Press Releases E-newsletters News archive Coronavirus / COVID-19 Info & Resources Section 1 Coronavirus / COVID-19 Info & Resources SCDAA sickle cell/COVID-19 guidelines Patient Provider SCD COVID Registry Contact info for Drs. Ahmar Zaidi and Michael Callaghan Assistance navigating resources Section 2 U of M COVID-19 Pandemic Resource Guide Resources for day-to-day living during COVID-19 Locate community resources by zip code Food Mental Health Internet & Device Access Talking with your children about COVID-19 Education and enrichment Ways to connect United Way 2-1-1 COVID-19 risk assessment Meals for children COVID-19 cases in Michigan SCDAA-MI Protocols CDC Recommendations for People at High Risk Section 3 Cheat Codes: Emergency Sickle Cell COVID-19 Podcast How to get tested for COVID-19 COVID-19 symptoms Section 4 Information from Michigan health departments What you need to know about handwashing Statewide resources and information flyer City of Detroit Water Restart Plan Coping with Coronavirus Anxiety Patient Support We’re working to keep you SAFER NIH health maintenance for sickle cell CDC opioid clarification for sickle cell disease NIH treatment guidelines for sickle cell disease Know Your Rights – The Joint Commission Speak Up For Your Rights – The Joint Commission Ask Your Advocate to Speak Up – The Joint Commission Passport to Health Toolkit Tips for trips to ER Clinical trials Sickle cell facts and figures Sickle cell glossary Understanding medical speak Looking for a hematologist? Other informational resources One SCD Voice Cheat Codes Podcast Living with SCD Self-Care Toolkit Get Connected Patient Powered Registry The Sickle Cell Podcast Generation S Get Involved Donate Ways 2 Give Why donate? Donate online Host a Facebook fundraiser Amazon Text to Give Kroger community rewards Check or money order Corporate partnerships 2020 Sickle Cell Matters Walk 2020 Sickle Cell Matters Walk Host Committee Our Donors Advocate 2020 Census information Current and recent issues we’re working on Advocacy training Are you ready to vote? Michigan voter information Our advocacy partners Do you know who represents you? Find your representative. Volunteer Sickle Cell 911 SCDAA sickle cell/COVID-19 provider guidelines SCD COVID Registry ASH COVID FAQs SAFE(R) card and accompanying NIH guidelines NIH and AHRQ ER triage guidelines NIH Sickle Cell Pain Algorithm How to conduct a sickle cell assessment (6 min video) High ER utilization and perceptions of addiction/drug-seeking behavior (3 min video) About the SAFE(R) Initiative CDC clarification on opioids for sickle cell disease NIH Guidelines NIH full recommendations NIH quick guide to recommendations NIH guidelines – acute care breakout (11 complications) ASH pocket guides for acute and non-acute care management Management of acute complications of sickle cell All pocket guides Cardiopulmonary and kidney disease Health maintenance and management of chronic complications Hydroxyurea and transfusion therapy About SAFE(R) SAFE(R) card How to partner Provider and patient anecdotes CDC opioid guidance for sickle cell HHS Asst. Sec’y for health comment Office of Minority Health statistic SCD Education Resources for provider education Improving Emergency Department-Based Care of Sickle Cell Pain American College of Emergency Physicians (ACEP) Resources Acute and Emergency Department Assessment and Treatment Sickle Cell is More Than Pain: Managing Complications Helpful Contextual Videos About Sickle Cell Disease Ongoing Educational Opportunities Events Event Calendar 2020 Sickle Cell Matters Walk Register today Set up your team Sponsor info Vendor reservation Volunteer Warrior Stroll Salute to Legacy Warriors Virtual Summit Leadership and Key Volunteers Who to contact 2019 Event Gallery Cynthia Coles Circle Luncheon, May 18 World Sickle Cell Day, June 19 Sickle Strong Empowerment Circle Balloon Launch, June 19 2019 Sickle Cell Matters Walk 2018 Gallery 2018 Sickle CELLabration World Sickle Cell Day 2018 2018 Sickle Cell Matters Awareness Walk 2018 Cynthia Coles Circle Benefit Luncheon Campaign Awareness Launch More Contact Us Client Feedback Volunteer Search Client Assistance Phone numbers to reach our patient advocate and social work staff throughout the state of Michigan.
- Career Day | -scdaami-
- Treatments | -scdaami-
sickle cell treatments While there is no universal cure for sickle cell disease (yet), there are several therapeutic approaches to relieve symptoms, reduce complications, and extend life. Early treatment (by eight weeks) by a hematologist is critical for newborns. Beginning a course of prophylactic penicillin at age two months was a historic intervention in changing the course of childhood sickle cell survival. View our Feb. 29th Treatment Workshop where we discussed all the current treatments available to cure sickle cell. CLICK TO PLAY ON FACEBOOK Part 1 with Dr. Wanda Whitten-Shurney (44 mins) CLICK TO PLAY ON FACEBOOK Part 2 with Dr. Ahmar Zaidi (58 mins) The only cure for sickle cell disease is a bone marrow or stem cell transplant. Most sickle cell disease transplants are currently performed in children who have had complications such as strokes, acute chest crises, and recurring pain crises. These transplants usually use a matched donor. Blood and bone marrow transplants are riskier in adults. Read more Medicines can reduce or alleviate symptoms and complications and prolong life. Penicillin In children who have sickle cell disease, taking penicillin two times a day has been shown to reduce the chance of having a severe infection caused by the pneumococcus bacteria. Newborns need to take liquid penicillin. Older children can take tablets. Many doctors will stop prescribing penicillin after a child has reached the age of 5. Some prefer to continue this antibiotic throughout life, particularly if a person has hemoglobin SS or hemoglobin Sβ0 thalassemia, since people who have sickle cell disease are still at risk. All people who have had surgical removal of the spleen, called a splenectomy, or a past infection with pneumococcus should keep taking penicillin throughout life. Hydroxyurea Hydroxyurea is an oral medicine that has been shown to reduce or prevent several sickle cell disease complications. This medicine was studied in patients who have sickle cell disease, because it was known to increase the amount of fetal hemoglobin (hemoglobin F) in the blood. Increased hemoglobin F provides some protection against the effects of hemoglobin S. Watch Dr. Shurney’s animated video about Hydroxyurea and how it works Endari Approved by the FDA for sickle cell use in 2017, Endari is an oral L-glutamine therapy for sickle cell disease and sickle cell thalassemia that reduces the acute complications of sickle cell disease in adults and children 5 years and older. It works by increasing the amount of glutamine in the blood. The added glutamine is taken up by the defective sickle cells, and when metabolized (broken down) results in the release of antioxidants.Common side effects include constipation, nausea, headache, abdominal pain, cough, pain in the extremities, back pain and chest pain. Patient web site Endari co-pay assistance Adakveo In 2019, the FDA also approved a new medicine to reduce the number of pain crises experienced by adults and children 16 years and older who have sickle cell disease. The medicine, which is given through an IV in the vein, helps prevent blood cells from sticking to blood vessel walls and causing blood flow blockage, inflammation, and pain crises. Possible side effects include nausea, joint pain, back pain, and fever. Patient resources web site Downloadable patient brochure Oxbryta The U.S. Food and Drug Administration (FDA) approved a new medicine in 2019 to treat sickle cell disease in adults and children 12 years and older. The oral medicine prevents red blood cells from forming the sickle shape and binding together. This may decrease the destruction of some red blood cells, which in turn lowers the risk for anemia and improves blood flow to your organs. Possible side effects include headache, diarrhea, abdominal pain, nausea, fatigue, and fever. Rarely, allergic reactions may occur, causing rashes, hives, or mild shortness of breath. Talk to your doctor about other medicines you take. Patient web site Caregiver tips Downloadable patient information leaflet Transfusions are often used in acute or preventive situations. Transfusions are administered to treat and prevent certain sickle cell disease complications. These transfusions may include: Acute transfusion to treat complications that cause severe anemia. Doctors may also use transfusions when a patient has an acute stroke, in many cases of acute chest crises, and in multi-organ failure. A patient who has sickle cell disease usually receives blood transfusions before surgery, to prevent complications. Red blood cell transfusions to increase the number of red blood cells and provide normal red blood cells that are more flexible than red blood cells with sickle hemoglobin. Regular or ongoing blood transfusions for people who have had an acute stroke, to reduce the chances of having another stroke. Doctors also recommend blood transfusions for children who have abnormal transcranial Doppler (TCD) ultrasound results, because transfusions can reduce the chance of having a first stroke. There are other treatments for specific complications. Be mindful that not all treatments work for everyone. Some people find success with alternative treatments as well, including medical marijuana (be knowledgeable about legalities that may impact school, work and overall health). To stay as healthy as possible, patients should be sure to get regular medical care that includes a pediatrician (for children) or primary care physician (for adults) and a hematologist and work with them to create the best individual care plan. Patients should also live a healthy lifestyle and avoid triggers that may cause a pain crisis. Page sources: NIH: National Heart, Lung, and Blood Institute, FDA.gov, Endari, Adakveo, Oxbryta
- SAFERProvider | -scdaami-
SICKLE CELL 911: FAST ACCESS TO GUIDELINES & BETTER CARE Empowering medical professionals to implement evidence-based sickle cell action. Amplifying the patient's voice in care. OPIOIDS & SCD NIH GUIDELINES COMPLICATIONS ASH POCKET GUIDES ABOUT SAFE(R) SICKLE CELL 911 Resources for Provider Education Access/download a compilation of the NIH guides specific to SAFE(R). PARTNER WITH SAFER Improving Emergency Department-Based Care of Sickle Cell Pain "Presented in this article are 4 tenets of implementing guideline-adherent emergency sickle cell care gleaned from the available literature and continuous quality improvement efforts at our institution." . . ."Application of the principles discussed within can improve patient and provider satisfaction, quality, and safety." (From the American Society of Hematology) PDF Online American College of Emergency Physicians ACEP's Emergency Department Sickle Cell Care Coalition offers a substantial list of training and informational resources for medical professionals providing treatment in emergency and acute care settings here . Acute and Emergency Department Assessment and Treatment Sickle Cell Disease Care in the Emergency Department: Improvement Initiatives and Ongoing Research (1 hour) - a webinar from NIH, OMH and ACEP. SCD Core Concepts for the Physician and Nurse - Sickle Cell Pain (PowerPoint): A presentation from Duke University and The Johns Hopkins School of Medicine Emergency care for sickle cell – Podcast (1 hour): A focus on assessment and treatment. NOTE: The interviewer uses the term "sickler" throughout the podcast. This term in NOT well-received by sickle cell patients here. Sickle Cell is More Than Pain: Managing Complications Major Complications of Sickle Cell Disease and Nursing Implications - PDF download Sickle Cell Disease: When to Transfuse Learn about indications for blood transfusion in patients with sickle cell disease, the complications associated with these transfusions, and how you can help reduce the risk for these complications in your patients. Sickle Cell Disease TeleECHO Clinic - Didactic Video Series Project ECHO (Extension for Community Healthcare Outcomes) is an internationally recognized telementoring innovation that build clinician knowledge in diagnosing and treating complex disorders. Project ECHO connects local clinicians with experts from sickle cell centers to learn skills necessary to deliver high quality sickle cell disease care using this proven telementoring model. Via Washington University School of Medicine in St. Louis. Helpful Contextual Videos About Sickle Cell Disease Dr. Ahmar Zaidi at TEDxDetroit (10 min): Dr. Ahmar Zaidi, pediatric hematologist/oncologist at the Comprehensive Sickle Cell Clinic at Children's Hospital of Michigan discusses the systemic disparities that further threaten the well-being of people who live with sickle cell's life-threatening impact. Experts address the prevalence and overall burden of sickle cell disease across the globe and the role of community physicians in managing the disease via HCP Live Peer Exchange (5 min) Dr Ahmar Zaidi on Efforts Needed to Address Complications of Sickle Cell Disease (1 min): Ahmar Zaidi, MD, pediatric hematologist-oncologist, Comprehensive Sickle Cell Center, Children's Hospital of Michigan, discusses the need for more efforts from both the medical community and regulators to address the psychosocial complications of sickle cell disease. Ongoing Educational Opportunities "This practical toolkit provides clinicians with materials and resources to engage with patients and educate them about sickle cell disease. Use the toolkit with patients individually or in group education settings to help build a strong foundation for shared decision-making regarding treatment goals and preferences, transitions of care, and individualized treatment plans." Learn more . The U. S. Department of Health and Human Services Office of Minority Health offers the Sickle Cell Disease Training And Mentoring Program (STAMP) a free sickle cell disease telehealth series for primary care providers. Learn more . SOURCES: Medscape https://www.medscape.com/viewarticle/891436?src=par_cdc_stm_mscpedt&faf=1; Ward, R, Helman, A, Foote, J. Emergency Management of Sickle Cell Disease. Emergency Medicine Cases. August, 2015. https://emergencymedicinecases.com/emergency-management-of-sickle-cell-disease/. Accessed 02-18-2020; American College of Emergency Physicians, https://www.acep.org/by-medical-focus/hematology/sickle-cell/resources/. Accessed 04-28-2020. Prime Education LLC, https://primeinc.org/cme/monograph/3412/Transforming_Clinical_Outcomes_for_Patients_with_Sickle_Cell_Disease:_The_Power_of_Collaborative_Patient-Provider_Partnerships?utm_source=scdaa&utm_medium=email1&utm_campaign=83pr201. Accessed 09-11-2020.
- About Us Overview | -scdaami-
about us The Sickle Cell Disease Association of America - Michigan Chapter has been a leader in the sickle cell community since 1971. We are committed to improving the lives of people with sickle cell by keeping our mission at the center of everything we do. OUR HISTORY SICKLE CELL CENTER Our success all started with the vision of Dr. Charles F. Whitten. His daughter Dr. Wanda Whitten-Shurney continues the work. Read More > OUR IMPACT EVERYBODY COUNTS Numbers, numbers, numbers. But here at SCDAA-MI, every statistic represents a real person we fight for every day. Read More > OUR BOARD LEADERSHIP MATTERS Our board members provide mission and operational oversight with passion, dedication, and expertise. Read More > OUR STAFF 200 YEARS The SCDAA-MI staff brings more than 200 years of experience to its mission of changing the world of sickle cell. Read More >
- June 19th World SC Day | -scdaami-
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- 2020 Walk Sponsors and Vendors | -scdaami-
Sponsor Information Donate/Join/Fundraise Since the Walk is now virtual, registration is optional. You can turn your registration fee into a donation, join/create a team or become a fundraiser. Team Set Up Once you create a team, you'll get an email for page set up. We also have step-by-step instructions here to personalize your page. Sponsor Info Your company sponsorship heightens the visibility of your commitment to social responsibility. The return on investment benefits us all. Vendor/Exhibitor This year we're offering two vendor experiences: Both provide virtual promotion, one also offers limited sponsor benefits. Legacy Warriors Are you a sickle cell warrior who's 40 or older? We invite you to join our Legacy Salute! Sign up here by 9/5 to be included. Our 2020 Sickle Cell Matters Virtual Walk Sponsors Diamond Presenting Silver Copper Pfizer Donating to SCDAA-MI benefits the thousands of individuals who depend on our education, advocacy and awareness efforts. It also benefits your corporate responsibility goals. Honorary Chair: Deborah Smith Pollard Co-host of "Sunday Morning Inspiration" on MIX 92.3 FM and Professor of English Literature at the University of Michigan-Dearborn. Honorary Co-Chair: Dr. Ahmar Zaidi Pediatric Oncologist/ Hematologist, Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan, and known to many as "Dr. Z". 2020 Sickle Cell Matters Walk sponsorships help provide educational and career resources to students and adults, ensure quality counseling services for navigating life with this chronic condition, offer a bridge to primary and specialty care for underserved individuals, support low-income clients in need of emergency financial assistance to meet basic needs, and more. Many of our sponsorships provide year-round engagement opportunities for companies and employees. Click here to download the sponsorship packet. We're also looking for community partners to serve on our Sickle Cell Matters Walk Host Committee. Click here to download the interest form. For more information, contact Stefanie Worth , Director of Operations & Outreach at 313-864-4406.
- 2020 Sickle Sabbath | -scdaami-
2020 Sickle Sabbath Any Sunday Right click on the image above to download a photo you can use on your social media pages. Sickle cell disease can affect anyone of any nationality or ethnicity. We welcome all faiths to join us in educating their members about the prevalence of sickle cell disease, how it's inherited, and why it all starts with being certain about your sickle cell trait status. Support us any time of the year! Right click on the image above to download a pdf flyer you can share with your congregation. Right click on the image above to download a pdf fact sheet you can share with your congregation. Right click on the image above to download a pdf participation form . Please complete and return this form to our office after your service . If you have any questions or need additional information, please email us at email@example.com or call 313-864-4406. Thank you to the congregations that supported Sickle Sabbath as part of our 2020 World Sickle Cell Day celebration ! If you have not submitted your participation form, please download and return your information today so we can say thank you! June 20-21, 2020 World Sickle Cell Day Sickle Sabbath Participation Form
our history The History of the Sickle Cell Disease Association of America – Michigan Chapter The Passion Continues OUR MISSION To maximize the life potential of individuals living with sickle cell disease To enable individuals with sickle cell trait to make informed decisions with respect to family planning. To provide education and testing for the general public SCDAA-MI’s story began in August of 1971 at Kirwood Hospital when renowned pediatrician and sickle cell expert Dr. Charles F. Whitten founded the Sickle Cell Detection and Information Program. The agency’s creation was just one achievement on Dr. Whitten’s lengthy list of accomplishments. In 1956, he’d been selected as clinical director of pediatrics at Detroit Receiving Hospital – the first African American in the role. In 1960, he and Dr. Charles Wright founded the African Medical Education Fund. Nearly a decade later, he instituted Wayne State University’s Post Baccalaureate Enrichment Program after noticing that black students often needed additional preparation for medical school. Then in 1971 he formed the “Sickle Cell Center,” and along with Dorothy Boswell formed the National Association for Sickle Cell Disease (now the Sickle Cell Disease Association of America) that same year. He led the national organization for nearly 20 years. Over its 48 year history, the SCDAA-MI has held fast to its mission of improving the lives of individuals with sickle cell disease. Meanwhile, it has also grown in scope in response to evolving medical and social demands. Still situated on Detroit’s northwest side, in the original building of its founding, the agency completed purchase of its interconnected stretch of buildings in 1990. The structure contains 14 offices, a laboratory where free trait and disease screening is conducted, a conference room, and an educational wing. There is also ample outdoor space for client activities. SCDAA-MI is one of the only community-based organizations in the country responsible for overseeing a state-wide sickle cell program. After Dr. Whitten passed away in 2008, his daughter Wanda Whitten-Shurney, M.D. – a beloved pediatrician as well – stepped away from her role as Director of the Comprehensive Sickle Cell at Clinic Children’s Hospital of Michigan and assumed leadership of SCDAA-MI. Currently its CEO & Medical Director, she continues to steer the agency and manages to carve out time to care for newly-diagnosed infants at CHM as well. Dr. Shurney has been a familiar and caring face to hundreds of families whose children have received their out-patient care from her during her 30-year career. She has worked relentlessly to help kids and their families manage sickle cell, emphasizing education and coping strategies to help individuals enjoy healthier, more active lives. She also a member of the National Heart, Lung and Blood Institute Sickle Cell Advisory Committee . Her passion for sickle cell patients and the people who love them continues. LEARN MORE Dr. Charles F. Whitten Black History Month Sickle Cell Pioneers Dr. Whitten's papers acquired by NIH library Dr. Wanda Whitten-Shurney Read more about Dr. Shurney in our media section