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Sickle Cell Disease Association of America - Michigan Chapter Staff Tracie L. Conic, M.A., B.S.W ​Director of Client Services/HIPAA Compliance Officer ​ ​ Tonya Ashwood-Malone Data Manager ​ Khaleeda Robinson, MPH., B.S. Community Health Worker/Patient Advocate Detroit Michael Copeland, B.S. Community Health Worker/Patient Advocate Grand Rapids/Muskegon Area Jessica Williams​ Program Assistant Ben Frazier, B.S.W. Community Health Worker/Patient Advocate Saginaw/Flint Area Melanie Greer, B.S. Community Health Worker/Patient Advocate Benton Harbor/Kalamazoo ​ ​ ​ ​ Craig Bradley Director of Operations & Outreach ​ Darlene Hunt Maintenance/Courier Kristal Johnson-Cobb Administrative Assistant Cree King-Jackson Executive Assistant/Newborn Screening Assistant ​ Clifton Kirkman II Social Media Specialist ​ Jerica McBride, M.A. Education/Career Coordinator ​ Angela McCreary, B.S.W. Community Health Worker/Patient Advocate Lansing/Jackson Area Richard Reed Finance Manager ​ Wanda Whitten-Shurney, M.D. CEO & Medical Director our staff

sickle cell conditions SCROLL Sickle cell disease is the most common heritable blood disorder in the U.S. It affects 100,00 people, most of them living healthier and longer lives than would've been possible one or two generations ago. The disease is chronic, complex and challenging. But at the SCDAA-MI, we are resilient and resourceful - committed to improving lives. We're here to win. DISEASE & TRAIT What & How Learn about the history, transmission and variability of sickle cell disease, and what we're discovering about trait. Read More PATIENT SUPPORT Find Answers You have questions, we're here to help you get answers. Cut through the internet chatter with credible tips, tools and insights. Read More TREATMENTS Is there a cure? A universal cure isn't here yet, but there are disease-altering treatments for children & adults that you should know about. Read More SAFE(R) Stay SAFER in the ER Learn more about our SAFE(R) initiative and the evidence-based guidelines in place for emergency sickle cell care. Read More

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. " 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 PROVIDER INFO SCDAA HEALTH ALERT - COVID-19 AND SICKLE CELL DISEASE: An Outline to Decrease Burden and Minimize Morbidity PARTNER WITH SAFER COVID REGISTRY ASH COVID FAQs TOP OPIOIDS & SCD NIH GUIDELINES COMPLICATIONS ASH POCKET GUIDES ABOUT SAFE(R) SCD EDUCATION IF A PATIENT GIVES YOU THIS CARD, PLEASE CLICK THE IMAGE FOR NIH GUIDELINES! PLEASE TRIAGE AS ESI 2 PER NIH AND AHRQ "It is not possible to manage pain at triage for patients with renal colic, cancer, or sickle cell crisis. These patients should be triaged as ESI level 2 and rapid placement should be facilitated whenever possible." - AHRQ, Emergency Severity Index (ESI) Implementation Handbook (see page 26) Web site PDF NIH SICKLE CELL PAIN ALGORITHM HOW TO CONDUCT A SICKLE CELL ASSESSMENT These videos from Duke University's School of Nursing demonstrate how to conduct an assessment for a sickle cell patient's vaso-occlusive crisis (6 mins) and a patient with a high number of ED visits who might face perceptions of opioid addiction or drug-seeking behavior (3 mins). ABOUT THE SAFE(R) INITIATIVE 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. We're asking the medical community to partner with us in assuring patients that they'll be SAFE(R) in your facility because you'll adhere to CDC and NIH guidelines in their care. ​ Access/download a compilation of NIH guides specific to SAFE(R). ​ Printable patient SCD911 SAFE(R) Card . ​ Learn more about the SAFE(R) Initiative . CDC CLARIFICATION ON OPIOIDS FOR SCD Read the clarification letter from CDC to ASH online . ​ Read the CDC's statement against misapplication of the guideline here. Opioids and Sickle Cell BACK TO THE TOP NIH Sickle Cell Guidance NIH EVIDENCE-BASED MANAGEMENT OF SICKLE CELL DISEASE NIH full recommendations Click the image at left for a PDF of the full 161-page NIH recommendations. This link will take you directly to the full document at NIH's site. NIH Quick Guide to Recommendations "The purpose of this Guide to Recommendations is to provide clinicians with a digital resource of the treatment recommendations extracted from the full report. For more information, please refer to the full report. . . ." ​ Click the image at right for a pdf of the 48-page Quick Guide. This link will take you directly to the Quick Guide document at NIH's site. NIH GUIDELINES: ACUTE CARE BREAKOUT For ease-of-access, this section contains a breakout of individual acute complications of sickle cell with links to corresponding PDFs from the Quick Guide and the full recommendations. What does the patient report? Remember, there are no labs that can indicate or confirm a patient's level of pain ! Acute Chest Syndrome: Quick Full ​ Acute Stroke: Quick Full ​ Anemia: Quick Full ​ Fever: Quick Full ​ Hepatobiliary: Quick Full ​ Multi-System Organ Failure: Quick Full ​ Ocular Conditions: Quick Full ​ Priapism: Quick Full ​ Renal Failure: Quick Full ​ Splenic Sequestration: Quick Full ​ Vaso-occlusive crisis/pain episode: Quick Full ​ Complications ASH Pocket Guides ASH POCKET GUIDES FOR ACUTE AND NON-ACUTE CARE MANAGEMENT ASH POCKET GUIDE - MANAGEMENT OF ACUTE COMPLICATIONS OF SICKLE CELL Click the image to access a PDF of ASH's Management of Acute Complications of Sickle Cell Disease pocket guide. Presented by ASH in 2014, adapted from the National Heart, Lung, and Blood Institute's Evidence Based Management of Sickle Cell Disease: Expert Panel Report, 2014. (Click here to go directly to ASH's web site for links to all its sickle cell pocket guides.) ACCESS ALL ASH POCKET GUIDES FOR MANAGING SICKLE CELL Click here to go directly to ASH's web site for links to all the sickle cell pocket guides. The following links will take you to individual PDFs for download. Cardiopulmonary and Kidney Disease in Sickle Cell Disease: Screening and Management This pocket guide includes key recommendations from the American Society of Hematology 2019 guidelines for sickle cell disease: cardiopulmonary and kidney disease, available soon in Blood Advances. ​ Health Maintenance and Management of Chronic Complications of Sickle Cell Disease Presented by ASH in 2014, adapted from the National Heart, Lung, and Blood Institute's Evidence Based Management of Sickle Cell Disease: Expert Panel Report, 2014 ​ Hydroxyurea and Transfusion Therapy for the Treatment of Sickle Cell Disease Presented by ASH in 2014, adapted from the National Heart, Lung, and Blood Institute's Evidence Based Management of Sickle Cell Disease: Expert Panel Report, 2014 ​ Download the apps: For iOS For Android Web version of the apps BACK TO THE TOP SOURCES: https://www.minorityhealth.hhs.gov/sicklecell/, https://www.nhlbi.nih.gov/health-topics/evidence-based-management-sickle-cell-disease, https://www.nhlbi.nih.gov/sites/default/files/media/docs/Evd-Bsd_SickleCellDis_Rep2014.pdf, https://www.hematology.org/Clinicians/Guidelines-Quality/Quick-Reference.aspx, https://sickleemergency.duke.edu/educational-resources/videos, https://www.ahrq.gov/sites/default/files/wysiwyg/professionals/systems/hospital/esi/esihandbk.pdf

volunteer Contact Us Photo Release Client Feedback We have a variety of ways you can help us at SCDAA-MI – even during COVID. Social Media Ambassador – Like, share, re-post and re-tweet from our Facebook, Instagram and Twitter pages to help generate awareness of our work. Help us find and reach out to supporters in groups and on related pages and accounts. Educational sessions - Create lists of current topics and potential speakers, and helping us build our audiences. Advocacy – Reach out to elected officials online and on social media about policy actions effecting the sickle cell community Interested in something else? Let’s work together to find something that fits your commitment and schedule. ​ Just complete the volunteer form to let us know what you're interested in and when you're available. ​ ​ We appreciate everything you do for our cause! ​ Email: info@scdaami.org Phone: (313) 864-4406 Toll free: (800) 842-0973 Fax: (313) 864-9980 Volunteer Application Form Help us make a difference! First Name Last Name Email Phone Address Age A few words about you Please check here if you're under 18 Next

symptoms& complications Info You Should Know: Symptoms and Complications of Sickle Cell Disease (Although the language here is directed to parents, this list applies to both children and adults with sickle cell. When in doubt, please contact your medical provider or go to the hospital.) NIH NHLBI g uidelines for treating complications ​ ​ Anemia Your baby may have this condition if he/she lacks the number of healthy blood cells required to carry sufficient oxygen to the rest of the body. Some of the most common symptoms include paleness, low energy, breathing problems, and slower growth. ​ Treatment: The doctor will consider the severity of the symptoms to suggest a treatment plan, but they may rely on antibiotics and blood transfusion to treat the condition. ​ Acute Chest Syndrome It could be an extremely painful and serious situation because it restricts blood flow to the lungs. Some common signs and symptoms include chest pain, breathing problems, and fever. Treatment: The doctor may recommend treatment with blood transfusions, antibiotic medicine, pain medicine, and oxygen to help improve breathing. ​ Pain Pain is common and happens when sickled cells restrict blood flow. Pain can be anywhere in the body – it can be in organs and joints as well. The pain may continue for a few hours or extend to days and even weeks. It is important to give your child plenty of fluids, maintain temperature, and keep them from high altitudes to limit pain episodes. Treatment: Some of the most common treatment options include heating pads, prescription pain medicine, OTC pain relievers like ibuprofen, and hydroxyurea to help produce a specific type of hemoglobin. Extended pain requires hospitalization and narcotic medications. ​ Hand-Foot Syndrome A child may experience pain, coldness, or swelling in the feet and hands when the sickle cells affect the blood supply to these limbs. Treatment: The doctor may rely on certain pain-relieving medicine to treat the symptoms. Giving your child plenty of fluids may also help. ​ Splenic Crisis Sometimes, sickled cells accumulate in the spleen and clog it. This leads to swelling that prevents the spleen from filtering blood in the body. Specific signs include weakness, pain on the left side of the belly, and a rapid heart rate. Treatment: The usual treatment option is blood transfusion. The doctor may also consider removing the spleen iif splenic crisis becomes a regular issue. ​ Infection Your child may have to fight with several infections including the infection of the lining of the brain and lung infection. Signs and symptoms include breathing problems, fever, coughing, headaches, and pain in the bones. An oral temperature over 100.3 requires a trip to the emergency room to help prevent bacterial sepsis. Treatment: It is important to prevent an infection from happening by staying up to date on vaccinations. If your child gets an infection, your doctor may recommend some antibiotics to clear the infection. Taking antibiotics regularly may help prevent infections when your baby is between 2 months and 5 years of age. ​ Stroke Those altered red blood cells may restrict blood flow to the brain, which sometimes leads to a stroke. The most common symptoms include weakness on one side of the body, severe headache, and changes in speech, alertness, hearing, or vision. Treatment: Your child's healthcare provider will first notice these symptoms and then ask for an ultrasound, called Doppler ultrasound, to determine your child's risk for stroke. ​ Vision Loss Blindness and other vision problems may happen when these cells block blood supply to your child's eyes. Sometimes, the cells block the blood flow to a specific part of the brain that leads to vision loss. ​ Treatment: A regular eye exam with an ophthalmologist is necessary to avoid such issues, but your doctor may also recommend additional eye treatment to prevent further damage. ​ ​ More on major complications and their treatments from the CDC ​

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!

2019 Photo Gallery 2018 Photo Gallery photo galleries Awareness Campaign Launch 2020 event gallery World Sickle Cell Day - Friday, June 19th We asked you to #MaskUp4SickleCell and you did that! From across the country and around the globe Warriors and supporters showed up to share their stories, raise awareness, and push for action. Thank you! (Is your photo missing from our collection? Email it to us!)

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.