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  • Partner with SAFER | -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) SCD EDUCATION Learn more about implementing SAFER for sickle cell patients in your medical practice, facility, hospital system or agency.

  • Get Involved | -scdaami-

    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.

  • Sickle Cell Trait | -scdaami-

    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. sickle cell trait Sickle Cell Trait Facts ​ In some people the red blood cells can take on the shape of a farmer’s sickle. If you are born with this gene from one parent you have SICKLE CELL TRAIT. If you are born with this gene from both parents you have SICKLE CELL DISEASE. A person with sickle cell DISEASE has sickle cells in the blood stream which can cause health problems Such as pain, infection and anemia. A person with sickle cell TRAIT does not have sickle cells in the blood stream and does not have a disease. They're considered to be a carrier. If both parents have sickle cell TRAIT, each time a child is born there is a 25% (1 in 4) chance the child will have sickle cell DISEASE. This doesn't mean that if you have four children, one of them will have a chance of being born with sickle cell disease. It means that each child has a 25% chance of being born with the disease. There are two other fairly common traits that can also result in having a child with sickle cell disease: h emoglobin C trait and thalassemia trait. ​ Since you do not get sick from any of these traits, you may have one of them and not know it. People of childbearing age should know if they have any of these traits so that they can make informed decisions regarding family planning. ​ Know your trait status! View and download the full infographic here . SCDAA-MI offers free testing for sickle cell trait and sickle cell disease at its office: 18516 James Couzens Fwy, Detroit, MI 48235. Appointments and walk-ins are welcome. Call or contact us for more information. More info on the CDC's sickle cell trait site. Learn more about the NCAA and sickle cell trait

  • SAFER | -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 SCD EDUCATION SICKLE CELL 911 About the SAFE(R) Initiative Access/download a compilation of the NIH guides specific to SAFE(R). PARTNER WITH SAFER SAFE(R) stems from the sad and dangerous reality that many individuals with sickle cell opt to "wait out" an acute episode as long as possible rather than endure a traumatizing trip to the ED where they're likely to be stigmatized and/or undertreated. This treatment time lost equates to eventual organ failure or other tragic complications. Central to the SAFE(R) Initiative is the Sickle Cell 911 (#SCD911) card, the key to a site dedicated to acute sickle cell care, containing NIH guidelines in an easy-access form. For providers, Sickle Cell 911 serves as a portable portal to evidence-based practices, knowledge and resources for treating SCD and its complications. For the patient, it's evidence-based back up of information many have already shared to no avail. Or details they're too sick to effectively relay by the time they arrive in your ED. For us, it's a small way to take big steps toward catching up the adult medical community on strides pediatric practitioners have been making for the last 50 years: We've succeeded not only in getting sickle cell babies beyond the critical first five years, but we've now catapulted them into adulthood and find there is little safety net for their treatment and care. This reality shouldn't exist. You can be the change. "Only about 1 in 4 patients with sickle cell disease receive the standard of care described in current guidelines, and many studies have shown that patients do not receive treatment for their pain as soon as, or in appropriate doses as, other patients." -HHS Office of Minority Health #SickleCell911 #BlackPatientLivesMatter #EliminateHealthDisparities Join forces with SCDAA-MI! Assure Michigan sickle cell patients they're SAFE(R) in your facility than at home because you'll adhere to CDC and NIH guidelines in their care. ​ Here's what you can do: ​ Assess your ED's readiness to provide guideline-adherent emergency sickle cell care using ASH's approach . (PDF ) Let hospital and ED staff know that we're sending patients out with their SCD911 cards. Contact us to set a face-to-face meeting with your practice or hospital leadership and address any concerns. Give us the opportunity to speak directly with physicians, specialists and other medical professionals so we can discuss the burden of sickle cell, dispel common myths, and offer tips on adhering to the NIH guidelines. Spend some time with us. Meet our patients, their families, our staff and supporters. Put a face to the discussion. Let us know how you'd like to partner. ​ #ThankYou For more information, contact Stefanie Worth at the Sickle Cell Disease Association of America - Michigan Chapter. “We must ensure that people living with sickle cell disease don’t become collateral damage in the fight against the opioid overdose epidemic.” “During a pain crisis, SCD patients often suffer more than they should because of the complex nature and mechanisms of acute and chronic sickle cell pain, combined with a lack of understanding by health care professionals of the unique needs of these patients. We are committed to protecting their access to the appropriate and safe use of opioids, while developing more effective ways to prevent and treat SCD pain.” -Adm. Brett Giroir, MD, HHS Assistant Secretary for Health Visit our Sickle Cell 911 provider page to learn more about sickle cell and access information about current clinical practice guidelines. ​ here SOURCES: https://www.minorityhealth.hhs.gov/sicklecell/, https://www.ashclinicalnews.org/spotlight/feature-articles/the-other-opioid-epidemic/, https://ashpublications.org/hematology/article-lookup/doi/10.1182/asheducation-2017.1.412

  • Services Overview | -scdaami-

    our services For more information: Detroit Main Line: (313) 864-4406 Children's Hospital SC Clinic: (313) 745-5613 Sickle Cell Trait Counseling: (313) 595-0280 School/Job Assistance: (313) 595-0541 Email info@scdaami.org ​ Contact our nearest satellite office: Adult Clinic Caseworker at DMC :(313) 864-4406 Benton Harbor/Kalamazoo Area: (313) 505-4081 Grand Rapids/Muskegon Area: (616) 788-9816 Jackson/Lansing Area: (800) 842-0973 Saginaw/Flint Area: (989) 372-0256 SCDAA-MI provides a range of services to individuals with sickle cell and their families. This includes counseling, support groups, referrals for financial and medical help, college and employment assistance, sending children to summer camp each year. The agency also coordinates newborn screening for all babies born in Michigan. WHAT WE DO HERE TO HELP Services We Provide Do you have medical insurance, primary care, a hematologist? Do you need accommodations at school/work? Let us help you manage your life with sickle cell. Read More PARTNER RESOURCES Community Connections We've compiled a handy list of helpful partner resources you can use to help meet basic and emergency needs for yourself and/or your family. Read More COVID-19 INFORMATION What You Should Know Individuals with sickle cell run a higher risk of complications if they contract COVID-19. Get SCD-specific info and guidelines to help stay safe. Read More

  • Client Feedback | -scdaami-

    client feedback Volunteer Photo Release Client Feedback SCDAA-MI has been helping improve the lives of individuals with sickle cell for nearly half a century. How are we doing? We'd like to hear from you to help shape our work for the next 50 years. Use the form below to tell us how we've been able to help you, what we can do better, and to share your ideas for other services. Your voice matters! Thanks for sharing your feedback!

  • Contact Us | -scdaami-

    contact us Volunteer Photo Release Client Feedback WE'RE NOW WORKING REMOTELY TO HELP PROTECT OUR COMMUNITY. PLEASE CALL FOR ASSISTANCE. THANK YOU! ​ If you need assistance, have questions, or would like to partner in SCDAA-MI's work,our staff will be happy to help. Contact Us First Name Last Name Email Phone Type your message here... Thanks for reaching out! Submit Email: info@scdaami.org Detroit/SE Mich: 313-864-4406 or 800-842-0973 Children's Hospital SC Clinic: 313-745-5613 Sickle Cell Trait Counseling: 313-595-0541 School/Job Assistance: ​ Our Address: 18516 James Couzens Fwy. Detroit, Michigan 48235 ​ Hours of Operation: 9 a.m. - 5 p.m. Monday - Friday ​ You can also contact our nearest satellite offices: Detroit Area (313) 613-7327 Benton Harbor/Kalamazoo Area: (304) 404-4229 Grand Rapids/Muskegon Area: (616) 788-9816 Jackson/Lansing Area: (517) 249-9528 Saginaw/Flint Area: (989) 372-0256 Photo/Video Release The Sickle Cell Disease Association of America - Michigan Chapter, Inc. frequently takes photos and video at its events and activities and ask that participants sign a waiver allowing the use of their likeness in publications, our web site, social media sites, and other public forms. You will only need to complete this form once. If at any time you wish to revoke use of your likeness in the future, you must do so in writing. Children under 18 require consent from a parent or guardian. Please contact us with questions. Thank you! ​ Download release form here . Please complete and return to info@scdaami.org

  • Press Releases | -scdaami-

    News media releases and alerts from SCDAA-MI press releases 2019-20 Press Releases ​ September 17, 2020: MEDIA ALERT: SCDAA-MI marks Sickle Cell Awareness Month with walk, ER call-to-action June 12, 2020: SCDAA-MI “Shines the Light” for World Sickle Cell Day, June 19 February 26, 2020: SCDAA-MI Announces SAFE(R) Initiative to Improve Emergency Sickle Cell Care November 20, 2019: Dr. Wanda Shurney Responds to FDA's Approval of Adakveo FOR IMMEDIATE RELEASE September 17, 2020 ***MEDIA ALERT*** SCDAA-MI marks Sickle Cell Awareness Month with walk, ER call-to-action Virtual walk participants encouraged to “move how you choose” on Sept. 19 Physician, hospital partners urged to take a stand for SAFER sickle cell care WHAT: The annual Sickle Cell Matters Walk raises consciousness around the most common genetic disorder in the U.S., but this year it happens from wherever participants are. More than just an awareness event, SCDAA-MI’s walk raises funds, promotes the need for additional sickle cell research, and combats medical inequities often faced by sickle cell patients. #SickleCellMatters #SickleCellMattersWalkMI #SickleCellLivesMatter WHO: SCDAA-MI CEO & Medical Director, Wanda Whitten-Shurney, M.D.; 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, Ahmar Zaidi, M.D., a Pediatric Oncologist/Hematologist, in the Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan, and nationally known SCD advocate known to most as “Dr. Z.” Event sponsors: (Diamond Presenting) Global Blood Therapeutics and Emmaus Life Sciences; (Silver) Novartis, Medunik USA, and Wayne County Community College District; (Copper) Pfizer and Functional Fluidics. WHY: Though medically recognized more than 100 years ago, it was only the introduction of prophylactic penicillin in the 70s and subsequent comprehensive pediatric efforts that now allow most individuals with sickle cell to live far beyond childhood and well into adulthood. However, there are just four disease-modifying treatments available to sickle cell patients, with two of those achieving FDA approval less than a year ago. Most patients, then, resort to emergency department care for sickle cell’s unpredictable, indescribable pain crises. Once there, only about one in four patients receives the standard of care described in current guidelines and many studies have shown that patients do not receive treatment for their pain as soon as, or in appropriate doses as, other patients, according to the U.S. Health and Human Services Office of Minority Health. WHEN: Saturday, Sept. 19 WHERE: The virtual Sickle Cell Matters online program premiers at 10 a.m. EST on SCDAA-MI’s YouTube channel (https://www.youtube.com/channel/UChFCW2PqipdZiRKcb16Z5Gw ) and Facebook Live @SickleCellMichigan. Interested hospital and physician partners can learn more and partner with SAFER at www.scdaami.org/sicklecell911. MEDIA CONTACT: Stefanie Worth | email: worths@scdaami.org ABOUT SCDAA-MI: Our Mission: To maximize the quality of life 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. Founded in 1971 by Charles F. Whitten, M.D., the Sickle Cell Disease Association of America – Michigan Chapter, provides education, assistance, and advocacy for individuals living with and families affected by sickle cell disease. Other services include counseling, support groups, referrals for financial assistance and medical care. SCDAA-MI connects students and job seekers with school, college and employment assistance; sends children to summer camp each year, and works to raise public awareness. The agency also serves as the coordinating center for the newborn sickle cell screening program for the Michigan Department of Health and Human Services. SCDAA-MI’s services are available throughout Michigan and span lifetime needs. For more information, visit www.scdaami.org or call 313-864-4406. ### BACK TO THE TOP SCDAA-MI “Shines the Light” for World Sickle Cell Day, June 19 Supporters are asked to #MaskUp4SickleCell, celebrate community grads, and recognize #SickleSabbath JUNE 12, 2020 PRESS RELEASE PDF ​ CONTACT : Stefanie Worth Sickle Cell Disease is the most prevalent inheritable blood disorder in the country, affecting 70,000 – 100,000 individuals, most of whom are African American. “It’s a blood disease, not a black disease,” says Dr. Wanda Whitten-Shurney, citing one of the takeaways her agency and other community-based sickle cell organizations want people to learn through this year’s World Sickle Cell Day events. Sickle cell is genetic – not contagious – and most common among people of African descent and those of Latin American and Middle Eastern heritage, but can affect anyone of any race. ​ “We have an entire weekend of activities that include generating awareness, honoring our graduates, and learning during worship,” says Shurney, CEO and Medical Director of the Sickle Cell Disease Association of America – Michigan Chapter Inc. “We’re sending our message out into the world to create change on behalf of a group of individuals who were born with a disease that is almost always automatically discriminated against.” Efforts for World Sickle Cell Day, Friday, June 19, aim to enlighten the community-at-large. A social media blitz featuring the hashtags #MaskUpForSickleCell and #BehindTheMask will feature photos of patients, caregivers and allies in red masks telling their stories and sharing key messages: Sickle cell disease affects individuals of all races. It’s a BLOOD disease, not a Black disease. It is in your genes. It is NOT contagious. Individuals with sickle cell disease are not drug addicts, they need pain relief. If both parents have sickle cell trait they can have a child with sickle cell disease. GET TESTED to know for sure. ​ Though medically recognized more than 100 years ago, it was only the introduction of prophylactic penicillin in the 70s and subsequent comprehensive pediatric efforts that now allow most individuals with sickle cell to live far beyond childhood and well into adulthood. To help celebrate their milestones, World Sickle Cell Day continues on Saturday, June 20 with a Virtual Graduation Open House for students finishing high school, trade school or college. On Sunday, June 21, World Sickle Cell Day attention turns to houses of worship varying in size, denomination and membership composition for Sickle Sabbath. This outreach effort focuses on educating people about sickle cell trait, which is carried by approximately 1 in 12 African Americans. SCT is also found among people with ancestry from sub-Saharan Africa; the Western Hemisphere (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy according to the Centers for Disease Control. “Sickle cell disease starts with sickle cell trait” is the message churches are asked to carry to their congregations along with information about chances of inheritance and challenges of the disease. ​ “This is an impactful time in America and we hope that World Sickle Cell Day can build on the Black Lives Matter movement to create real change in medical settings for people with sickle cell. I’m calling on my colleagues who knelt in solidarity with White Coats For Black Lives to create a movement that makes the emergency rooms and hospitals safe spaces for sickle cell patients,” says Shurney. ​ “The hallmark of sickle cell is excruciating, unpredictable pain that often drives patients to seek care in emergency departments,” Shurney continues. “These are individuals who’ve often lived with pain since childhood and – being good patients – know their bodies and what they need to control their pain, which is typically opioids. Yet they arrive at hospitals seeking relief and are often accused of being there just to get drugs. You would think they’d be treated like a Type 1 diabetic who shows up needing care and knows their proper insulin dosage, but they’re not.” ​ In February, SCDAA-MI launched its SAFE(R) initiative to help counter this reality. SAFE(R) provides medical professionals with quick access to an online portal at SCDAAMI.org/SickleCell911 that provides clinical practice guidelines for sickle cell established by the National Institutes of Health, sickle cell-specific opioid guidance from the CDC, and emergency room triage guidelines from the Agency for Healthcare Research and Quality, as well as best practices and recommendations from the American Society for Hematology and other leading experts in sickle cell treatment. ​ Only about one in four patients with sickle cell disease receives the standard of care described in current guidelines, and many studies have shown that patients do not receive treatment for their pain as soon as, or in appropriate doses as, other patients, according to the U.S. Health and Human Services Office of Minority Health. ​ “The world is at a crossroads and so is sickle cell disease. Two new medications were approved by the FDA for treatment at the end of 2019. Yet, patients still face barriers accessing these meds and receiving competent, compassionate medical care,” says Shurney. “Too many providers still don’t know how to properly treat sickle cell patients. Stereotypical biases prevent many individuals from receiving care according to nationally established guidelines – or any care at all. ​ “We have a long way to go to reach health equity where sickle cell is concerned. Now is a great time to start.” BACK TO THE TOP SCDAA-MI ANNOUNCES SAFE(R) INITIATIVE TO IMPROVE EMERGENCY SICKLE CELL CARE Effort aims to assist medical community in proper treatment of long-misunderstood disease ​ ​ February 26, 2020 PRESS RELEASE PDF ​ CONTACT : Stefanie Worth ​ Today, the Sickle Cell Disease Association of America - Michigan Chapter launched a new initiative designed to help advance the care and well-being of individuals living with sickle cell disease. The initiative, known as SAFE(R) , provides medical professionals with quick access to an online portal at SCDAAMI.org/SickleCell911 that provides clinical practice guidelines for sickle cell established by the National Institutes of Health, sickle cell-specific opioid guidance from the Centers for Disease Control, as well as best practices and recommendations from the American Society of Hematology and other leading experts in sickle cell treatment. Though medically recognized more than 100 years ago, it was only the introduction of prophylactic penicillin in the 80s and subsequent comprehensive pediatric efforts that now allow most individuals with sickle cell to live far beyond childhood, although their lifespan still falls short of the national average by about 30 years. Yet, while research and treatments for the disease are now gaining more attention, individual’s lives are at stake daily due to a lack of adult medical providers trained in sickle cell’s complexities. In fact, there is a peak in mortality at the time of transition from pediatric to adult care. “For more than 30 years, I’ve had the privilege of serving as pediatrician to Michigan children with sickle cell disease – caring for them and their families, and advocating for their needs. Along with my colleagues across the country, we’ve achieved levels of success in their healthcare that my father only dreamed of when he started SCDAA-MI 49 years ago,” says Dr. Wanda Whitten-Shurney, CEO and Medical Director. “Now we’ve reached this pivotal point in sickle cell history where research and treatment possibilities are at an all-time high, yet, we are losing far too many patients we’ve brought all this way for the past four decades to a medical system unprepared to receive them.” The emergency room – a frequent stop for our patients – is an extremely perilous place for adults. Individuals out-of-state have often reached out to their former pediatricians at the Children’s Hospital of Michigan Sickle Cell Clinic asking them to coach a doctor in charge of their care unfamiliar with the disease. The situation has produced a skepticism among patients that they’ll be adequately cared for, sometimes causing them to take their chances and not go to the ED at all. Central, then, to the SAFE(R) Initiative is the wallet-sized Sickle Cell 911 (SCD911) card, which directs providers to the SAFE(R) site at SCDAAMI.org/SickleCell911 . In addition to guidelines, recommendations and best practices, the medical professional-focused pages also provide educational resources about the disease and its potential complications. Sickle cell patients are advised to carry the SCD911 card with them and present it when they need emergency care – whether at home or away. Patients and caregivers have shared stories about ED providers resorting to the internet or medical journals to find information about treating the disease. The SAFE(R) initiative puts that information at providers’ fingertips in an easily accessible and usable format, hopefully saving crucial acute care time that in turn leads to saving lives. “I’m appealing – no, challenging – my counterparts in adult primary, specialty, and emergency medicine to partner with us in changing this narrative by committing to SAFE(R) treatment. It’s time for a plot twist, so to speak, and we invite you to help re-write the future chapters of the sickle cell story. Patients throughout Michigan are looking for SAFE(R) spaces for care every day. Let us know we can confidently refer them to you and your health systems for this compassionate, equitable, and guideline-based treatment. History will thank you and so will we.” ​ ​ BACK TO THE TOP Dr. Wanda Shurney Responds to FDA's Approval of Adakveo First targeted treatment sparks excitement and hope among doctors and those living with the debilitating condition ​ ​ November 20, 2019 PRESS RELEASE PDF ​ CONTACT : Stefanie Worth Friday, the FDA gave its approval for Adakveo (crizanlizumab-tmca) , the first targeted therapy to treat pain in patients with sickle cell disease (SCD). “This medication is a potential game changer in the quest for better treatment for patients with sickle cell disease (SCD),” said Wanda Whitten-Shurney, M.D., CEO and Medical Director of the Sickle Cell Disease Association of America - Michigan Chapter (SCDAAMI). “We are excited that after 109 years, individuals with SCD can finally say there is a medication developed specifically for them. For 20 years our patients had only one disease modifying medication, hydroxyurea. ​ “Unfortunately, because it is a drug used to treat cancer, many physicians are hesitant to prescribe it and many patients are afraid to take it – leaving supportive care such as blood transfusions, antibiotics for infections, and potent narcotics for essential pain relief as their only options,” said Dr. Shurney. First recognized by the medical community in the United States in 1910, SCD is a genetic condition inherited from two parents who carry the gene for sickle cell trait. The hallmark of the disease is episodes of unpredictable and often excruciating pain due to crescent- (sickle) shaped red blood cells that block the flow of blood, and therefore the delivery of oxygen, to vital organs. These red blood cells are also fragile and break down early causing anemia and fatigue. The newly-approved Adakveo targets the episodes of pain frequently referred to as a pain crisis. ​ “We hear story after story from patients in genuine need of significant pain treatment being denied the compassionate and competent care they desperately need and deserve because many in the medical community are unsure, uncomfortable, or unaware of how to best treat sickle cell patients,” said Dr. Shurney. “Patients in crisis are often questioned about the validity of their symptoms and assumed to be ‘drug seeking’.” This problem is exacerbated by the current opioid crisis. ​ In addition to her role at the SCDAAMI – fondly known as the Sickle Cell Center throughout the community – Dr. Shurney has been a familiar face to many families whose children have been patients at the Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan during her 30-year career providing out-patient care with an emphasis on education and coping strategies. She has worked relentlessly to help kids and their families manage the chronic ailment while enjoying healthier, more active lives. Many of her patients are now adults – something unheard of 30 or 40 years ago. ​ “Thanks to advances like the administration of penicillin to give children with SCD a fighting chance against infection, we’re now seeing many patients living a closer to normal lifespan, but they are still faced with significant challenges,” said Dr. Shurney. “This illness can disrupt every aspect of the family’s life. Children miss school, parents and adults miss work which can result in termination of employment and the resultant financial strain on the family. Frequent trips to the doctor and repeated hospitalization are an additional burden. Many individuals have some level of pain every single day. After 109 years, it is past time to improve life and offer hope to this patient population.” ​ Though numbers are thought to be higher, an estimated 100,000 individuals in the U.S. currently live with some form of the debilitating and life-threatening disease. Comparatively, there are about 30,000 people with cystic fibrosis and 20,000 people (predominantly men) with hemophilia.1 Yet, despite three to five times as many people living with SCD, the disease remains widely unknown, misunderstood, and poorly resourced. ​ “This in the face of the fact that SCD primarily affects people of color - mostly African Americans and Latinos, but also East Indians, Greeks, Italians, individuals from the Middle East, and other people from malaria-afflicted parts of the world,” said Dr. Shurney. The disease is an evolutionary response to malaria: Those with sickle cell trait are less likely to get malaria. But nature’s protective mechanism brought about its own unbearable consequences. ​ “Thanks to the Orphan Drug Act, there are numerous promising clinical trials underway. We are also encouraged by the National Institutes of Health’s Cure Sickle Cell Initiative striving for a genetic cure in the next five to 10 years,” said Dr. Shurney. “The FDA’s approval of Adakveo is a big step in the right direction. Our next challenge is to make sure the medication is accessible to the patients who so desperately need it. Individuals with sickle cell disease are living longer, but we are also focused on improving their quality of life.” 1 Cystic fibrosis and hemophilia statistics courtesy of the Centers for Disease Control at www.cdc.gov ​ ​ BACK TO THE TOP

  • News and Media Archive | -scdaami-

    An archive of news and media from SCDAA-MI news archive World Sickle Cell Day On Wednesday, June 19, GBT hosted guest speaker Dr. Wanda Whitten-Shurney, the CEO and Medical Director of the Michigan chapter of the Sickle Cell Disease Association of America (SCDAA), as part of its World Sickle Cell Day (WSCD) activities. As part of GBT's support, employees were encouraged to wear their “Hope” T-shirts provided by GBT and designed by artist and SCD activist, Hertz Nazaire. Blood Drive Pictured Michelle Huckaby, SCDAAMI Community Health Worker, Kristal Cobb, SCDAAMI Administrative Assistant, Heather and Tracey Moorehead, Board Members, Anastasia Worthy, SCDAAMI Youth Ambassador and Kym Worthy, SCDAAMI Board Chair. Myths about Sickle Cell ​ Dr. Wanda Whitten-Shurney, CEO and Medical Director of the Sickle Cell Disease Association of America – Michigan Chapter and former SCDAA-MI board member Amyre Makupson discuss myths surrounding sickle cell and facts of the disease .

  • 2018 Gallery | -scdaami-

    2018 event gallery 2020 Photo Gallery 2019 Photo Gallery Awareness Campaign Launch 2018 SICKLE CELLebration Boll Family YMCA Detroit Saturday, September, 22, 2018 June 19th - World Sickle Cell Day! Saturday, June 9th, 2018 #Sicklecellmatters Awareness Walk Palmer Park, Detroit, Michigan Friendship Baptist Church presents The 42nd Annual Cynthia Coles Circle Benefit Luncheon