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2019 holidays Camp Cancellation2 WSU 02282020 Whitten-Shurney MD Register2 GivingTuesdayNow Walk promo IMG_0946 SCDAAMI Stabenow meeting Ahmar TEDx IMG_0943 iseeu 2024 Events Mark your calendar and join us for fun, educational, advocacy, and celebratory events throughout the year. (Virtual for now, of course.) SCDAA-MI Upcoming Events Flyers will be uploaded in the future. ​ ​ WORLD SICKLE CELL DAY - WEDNESDAY, JUNE 19, 2024 ​ THE ANNUAL SICKLE CELL MATTERS AWARENESS WALK - SATURDAY, SEPTEMBER 14, 2024 (The Charles H. Wright Museum) ​ FLINT MICHIGAN SICKLE CELL AWARENESS WALK - SATURDAY, SEPTEMBER 7, 2024 Have questions? Need info? Want to send an idea for an educational topic? Contact us at info@scdaami.org or 313.864.4406.

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.

sickle cell disease Living with sickle cell disease isn't easy, but proper knowledge about the condition will help patients live a longer, healthier life and guide trait carriers in making educated child-bearing decisions. Symptoms & Complications Sickle cell trait Top A history of sickle cell What Is Sickle Cell Disease? Sickle cell is an inherited blood disorder in which the red blood cells change their shape. It is a genetic abnormality and is caused by an abnormal type of hemoglobin, called hemoglobin S or sickle hemoglobin. Normal red blood cells have a disc-like shape, but in patients of sickle cell disease, they take on a crescent or sickle shape. Normal blood cells carry oxygen to the body, but altered cells cannot move easily through your blood vessels, which affects the oxygen supply. These altered cells cannot carry oxygen properly because when they release oxygen, it sticks together and changes the shape of the red blood cell. ​ ​ Prevalence of Sickle Cell Disease Sickle cell has existed for thousands of years and millions of people around the world suffer from the disease, but it's more common in people with an African bloodline. It is also quite common in people whose ancestors come from the Arabian Peninsula; Mediterranean countries such as Turkey, Greece, and Italy; Central America; Spanish-speaking regions in South America; and parts of the Caribbean. As a whole, it affects approximately 100,000 Americans and is the most common heritable blood disorder in the U.S. ​ ​ How Do You Inherit Sickle Cell Disease? Sickle cell disease is not contagious – you're born with it. A child may have this disease when he/she inherits one hemoglobin S gene from each parent. About 1 in every 365 African American babies are born with sickle cell each year and. While the disease primarily affects African Americans and people of color - including individuals of Hispanic and Middle Eastern descent, anyone can inherit sickle cell if the genetics are in place. There are also other sickle cell mutations, including Hemoglobin SC disease and hemoglobin Sβ thalassemia, the two most common. Sickle Cell Trait If you inherit only one sickle hemoglobin gene from a parent you will carry the sickle cell trait. While the trait was once thought to be innocuous, in recent years more has been learned about carriers. People with the trait are more likely to suffer from conditions such as urinary tract infections or blood in the urine. Even athletes with sickle cell trait are now advised to take special precautions with their health. Learn more about sickle cell trait sickle cell trait Artwork copyright Ebony.com . Explore More In-Depth Information American Society of Hematology ASH Centers for Disease Control CDC National Institutes of Health NIH Back to the top Sickle Cell Disease: Milestones in Research and Clinical Progress (REVISED September 2018) - download here History A History of Sickle Cell Download the PDF here Back to the top

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un/re-used elements Our 2020 Sickle Cell Matters Walk features a Warriors dance challenge and a salute to our Legacy Warriors (ages 50 and up). Warrior Stroll #SickleSlideChallenge Be a part of the Warrior Stroll! New this year, the Warrior Stroll features the #SickleSlide dance challenge to open our Walk Day festivities. Warriors of all ages and abilities are welcome to participate in parts that suit their preference. Watch and learn , perfect your style, and post your video using #SickleSlideChallenge. Salute to Legacy Warriors The 2020 Sickle Cell Matters Walk will also feature a tribute to our Legacy Warriors - individuals with sickle cell who'll be 50 years or older as of Dec. 31, 2020. Sign up to be recognized on our web site, in the day-of-event printed program (must be signed up by Sept. 1, 2020), and from the stage during remarks.

Your gift to the Sickle Cell Disease Association of America - Michigan Chapter helps ensure that counseling, educational, medical, and basic needs services are addressed for people with sickle cell. By supporting our work, you help improve lives. ​ If you chose to make your gift anonymously, your name will not be listed in any materials where we might recognize donors. ​ You will receive electronic receipts from PayPal Giving Fund. We will email a gift acknowledgement to the name and email address you provided. Thank you for your support! donation confirmation

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 ​

get involved Together our tenacity and commitment have greatly brightened the future for sickle cell: comprehensive pediatric care has become a medical standard throughout most of the U.S., allowing patients to pursue college educations, take on dream careers, marry and welcome extended families. At the same time, many challenges remain: awareness among the adult medical community lags behind pediatric expertise at the expense of patient health. Sickle cell still bears the weight of stigma attached to systemic discrimination. While research is on the uptick, treatments are limited. There is no universal cure. ​ Your support matters in our quest for consciousness, equity, and a cure. Please join us today. DONATE The Sickle Cell Disease Association of America - Michigan Chapter thrives on the support of dedicated patients/clients, staff, volunteers, funders, sponsors, donors , and community partners . We've remained committed to our mission of improving the lives of people living with sickle cell disease for 48 years. Give today . ADVOCATE This is an exciting time for the sickle cell community as new treatments have recently become available and interest in research to find a cure has spiked. Yet, insurance hindrances, misplaced opioid restrictions, and ongoing systemic discrimination continue to block access to proper care and threaten the lives of patients. Raise your voice for sickle cell. VOLUNTEER There are always volunteer opportunities at SCDAA-MI for assistance at our annual Sickle Cell Matters Walk, encouraging an increased social media presence, office help, committees, and more. ​ Complete our volunteer form to let us know you're interested, and we'll contact you when opportunities arise.

News media releases and alerts from SCDAA-MI press releases Advisories from SCDAA's Medical and Research Advisory Committee Sickle Cell Disease Association of America Medical and Research Advisory Committee COVID-19 Update “December 23, 2021 – SCDAA MARAC reminds the sickle cell community that the COVID-19 pandemic is having another increase in infections. New variants like omicron are emerging, as is common for RNA viruses, and vaccination rates need to consequently improve. Vaccinations can protect against severe illness. A new mediation might also help as early treatment for infected individuals.” Further details/recommendations on website: https://www.sicklecelldisease.org/2021/12/23/marac-advisory-statement-update-about-covid-19/ ​ ​MARAC Advisory Statement on Post-secondary and Boarding School Education in the Age of COVID-19 (July 31, 2020) - SHOW THIS TO YOUR SCHOOL ADMINISTRATOR TO HELP THEM HELP YOU. MARAC Advisory Statement for SCD Patients Who are Teachers, Administrators, and Other Support Staff during School Reopening (July 30, 2020) - SHOW THIS TO YOUR EMPLOYER TO HELP THEM HELP YOU SCDAA MARAC Position on 2020 School Reopening (July 27, 2020) - SHOW THIS TO YOUR CHILD’S SCHOOL PRINCIPAL TO HELP THEM HELP YOU MARAC Advisory Statement Regarding SCD Patients during the time of “Reopening” the U.S. Economy (April 30, 2020) Sickle Cell Disease and COVID-19: Provider Advisory: An Outline to Decrease Burden and Minimize Morbidity (May 27, 2020) Health Alert for People with Sickle Cell Disease and their Caregivers (March 17, 2020) - SHOW THIS TO YOUR MEDICAL PROVIDERS TO HELP THEM HELP YOU A Health Note From Dr. Biree Andemariam , SCDAA Chief Medical Officer (March 13, 2020) ​

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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