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patient support SAFER Initiative NIH Guidelines & Opioids Patient Rights Tools and Tips Hematologist Search More Online Resources We want to make it simpler to find credible, useful information that helps make it a little easier to live with sickle cell. Be sure to scroll all the way to the bottom of the page. There's a lot of great info here, including the CDC's guidance on opioids for sickle cell, your rights as a patient, guidelines to help your doctors with your care, and more. top HEALTH ALERT FROM THE SICKLE CELL DISEASE ASSOCIATION OF AMERICA PATIENT INFO RETURNING TO WORK PROVIDER INFO Have you tested positive for COVID-19? Or do you have a cough with a fever? MICHIGAN WARRIORS ONLY PLEASE: You can contact your Primary Care Physician or proceed to the nearest emergency room in your area. Please respect the docs' time and dedication and only reach out to them if you’re diagnosed with Coronavirus or have a cough + fever. We appreciate them being available to the community this way! We're working to keep you SAFE(R)! Headed to the emergency room/department (ED)? Take this! Be sure to keep our SAFE(R) card on hand. It directs physicians/medical personnel to a sickle cell acute care site made just for them - putting all the current clinical practice guidelines at their fingertips in one place. No need to search the internet: PDF documents and source links are all included. So before you go, click the image to access a printable version. No time to print? Pull up the page on your phone (www.scdaami.org/patient-support) and take a screen shot. When you arrive, present it at the registration desk and note the time. Present another copy at triage. Again note the time. If you're too sick, remember that you have the right to take someone with you to act as your advocate. Let the hospital staff know that's what they're there for. We realize not everyone is familiar with the proper treatment for sickle cell. This can help you receive SAFE(R) care. Be sure to take the SAFER ER survey after each ER visit to let us know about your treatment and care. Contact us with q uestions or feedback. A tip from Twitter: Be sure to document your ED provider's name and course of treatment for future reference. Do the same if you're admitted. When someone takes good care of you, shout out a thank you on IG, Twitter or Facebook and tag #scdaami #sicklecell and the hospital. Let's be heard! SAFER Initiative BACK TO THE TOP NIH - HEALTH MAINTENANCE FOR SCD Click the image for a PDF of the NIH guidelines and recommendations for the health maintenance of people with sickle cell. (Approx. 40 pages) Read and provide a copy to your primary care physician. Click the yellow button to go directly to the full NIH document. Source: National Institutes of Health NHLBI CDC OPIOID CLARIFICATION FOR SCD The CDC clarified its opioid guideline in a letter to ASH stating it was not intended to manage SCD. The CDC refers providers to NIH NHLBI guidelines for care. Click the image for that letter or the yellow button for CDC statement on guideline misapplication. Source: American Society of Hematology NIH - TREATMENT GUIDES FOR SCD Click the image for a PDF of the full NIH clinical practice guidelines for the management of sickle cell disease (161 pages). Click the yellow button for a PDF of the NIH's (National Institutes of Health) 48-page quick guide to those practice guidelines. Source: National Institutes of Health NHLBI NIH Guidelines & Opioids BACK TO THE TOP Patient Rights Know Your Rights - The Joint Commission As a patient, you do have rights and a role regarding your treatment and care. This brochure has questions and answers to help you learn about your rights and role as a patient. Knowing your rights and role can help you make better decisions about your care. (Image links to brochure) Source: The Joint Commission Speak Up For Your Rights - The Joint Commission As a patient, you have the right to be informed about and make decisions regarding your care. You also have the right to care that is free from discrimination, as well as the right to have a patient advocate. Learn about the different rights you have as a patient. (Image links to short video) Source: The Joint Commission Ask Your Advocate to Speak Up - The Joint Commission As a patient, you have a right to have a patient advocate - a friend, family member, or whoever you designate. Your advocate can be a partner in your care, helping you through every step of your treatment. Watch this video and ask your advocate to Speak Up™! (Image links to short video) Source: The Joint Commission BACK TO THE TOP Tools and Tips PASSPORT TO HEALTH TOOLKIT Dr. Wanda Whitten-Shurney's Passport to Health Toolkit is a great source of information for maintaining your health. (Join us for an educational program to receive the backpack that goes with it. *While supplies last!) Source: Dr. Wanda Shurney TIPS FOR TRIPS TO ER Emergency room visits are a frequent course of action for people with sickle cell. The CDC provides this handout with suggestions for talking with physicians and navigating the experience. Source: Centers for Disease Control CLINICAL TRIALS Research into sickle cell treatments is at an all-time high. New possibilities move through a series of studies and approvals that include clinical trials. Interested in participating? Here's a list of current NIH-funded trials. Source: National Institutes of Health BACK TO THE TOP SICKLE CELL FACTS & FIGURES The American Society of Hematology (ASH) provides this clear and thorough handout with facts and figures to help educate yourself and others about the biology and impact of sickle cell disease. Source: American Society of Hematology SICKLE CELL GLOSSARY A diagnosis of sickle cell comes with its own language. If you're newly-diagnosed, the words can be overwhelming. This glossary will serve as both an introduction and a refresher for those who need it. Source: Missouri Dept. of Health & Senior Services UNDERSTANDING MEDICAL SPEAK Have you encountered unfamiliar terms used in your medical care? If so, you're not alone. Here you'l find definitions in every day language to help you better understand your condition. Source: Medical Library Association BACK TO THE TOP Looking for a hematologist? Try this zip code-based search . (We do not endorse the physicians listed. Use proper care in researching their expertise.) You can also contact our office for suggestions provided by existing patients/clients. Hematologist Search More Online Resources Other informational resources

our services For more information: Detroit Main Line: (313) 864-4406 Children's Hospital SC Clinic: (313) 745-5613 Sickle Cell Trait Counseling: (313) 864-4406 School/Job Assistance: (313) 595-0541 Email info@scdaami.org Contact our nearest satellite office: 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 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 CORONAVIRUS / COVID-19 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

Ways to participate in our virtual walk 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. The COVID-19 pandemic will keep us from walking together, but the reasons we walk are still present every day in every individual living with sickle cell. We still need your help to meet the needs of our community. How Our Virtual Walk Works “Join where you are and move how you choose” is the theme of this year’s Sickle Cell Matters Virtual Walk. This means you can participate from anywhere – home, a favorite landmark, nearby park, or your local drop-off election ballot box . (Hint!) Everyone who registers, donates, or starts a team will receive a pedometer, but you’re not limited to walking. Change it up! Transfer the 30-40 minutes you would have used to walk with our group to a session of Zumba, yoga, golf, dancing or yes, walking. We encourage you to start on Sept. 14 to help us promote the event. Post photos or videos of your activity to your social media accounts using #SickleCellMattersWalkMI #SickleCellLivesMatter #SickleCellMichigan. Have fun with it – show off your steps, shout out your team, team members, and the warrior you’re participating for. Then on Saturday, Sept. 19, join us on Facebook @sicklecellmichigan for the online celebration beginning at 10 a.m. Right click to download, save and share this graphic! Contests & Prizes Right click to download, save and share this graphic! Everyone who supports our 2020 Sickle Cell Matters Virtual Walk by registering, donating, fundraising, or starting a team by 9/5 will receive a pedometer as a thank you and reminder that fitness – movement – is important for all of us every day. Everyone who signs up as a fundraiser or creates a team by 9/5 will also be entered into a giveaway for a $100 gift card. We’ll recognize the two teams that raise the most money by Sept. 12. Team captain of the top team receives a $100 gift card. The second place team captain will receive a $50 gift card. The team captain with the most walkers as of Sept. 12 will receive a $100 gift card. We’re expanding our annual T-Shirt Contest to include posters this year. Create a design supporting #SickleCellLivesMatter. Show your poster or wear your T-Shirt in your virtual walk photos and videos. Enter your T-Shirt and poster designs in the contest by Sept. 5 for a chance to win a $100 gift card. Winners will be announced on Sept. 19. (You must be registered for the walk, donate, or be signed up as a fundraiser or team captain to be eligible for entry.) Tribute to Fallen Warriors We offer our heartfelt condolences to all the friends, families and loved ones of individuals with sickle cell who’ve passed away over the years. This year, again, we’ll pay tribute to the lives of those we've lost here in Michigan. To include your loved one in our tribute, please send the following to info@scdaami.org no later than Sept. 5: Name of the individual who passed away, dates of birth and death, and a photo. Right click to download, save and share this graphic! Salute to Legacy Warriors Right click to download, save and share this graphic! We’re inviting all individuals with sickle cell aged 40 and older to join our 2020 salute. Consider this an extra birthday celebration! The honors are open to all warriors, no matter where you live. Sign up here and send a photo of yourself to info@scdaami.org with the subject line “Legacy Warrior.” Be sure to include your name in the email. #WarriorsWipeItDownChallenge We’re inviting all sickle cell warriors to join in a special #WipeItDown challenge for our virtual walk. Post to your social media using any of the day’s hashtags: #SickleCellMattersWalkMI #SickleCellLivesMatter #WarriorsWipeItDown Right click to download, save and share this graphic! #SickleSlide Calling the hustle crowd! Take on the Sickle Slide to raise consciousness around sickle cell in a fun and active way. Post your video and tag us @sicklecellmichigan. Be sure to post a fact or two about your life with sickle cell and use #SickleSlide and #SickleCellMattersWalkMI. You could be featured in our Walk day celebration! howwalkworks contests legacywarriors fallenwarriors wipeitdown sickleslide Check our leaderboard frequently to see how your campaign is doing and what the competition is up to. For additional information, please contact the following SCDAA-MI staff for specific assistance or call (313) 864-4406: Registration, team setup or technical issues - email Kristal Johnson Sponsorships - email Stefanie Worth Vendor Information - email Tracie Conic

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

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 200 YEARS 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 CEO SICKLE CELL CENTER Our CEO brings passion and drive by seeking to bring awareness in the community and caring for individuals living with sickle cell disease. She maximizes profits and fulfills leadership skills to carry out the mission of the organization. Read More >

Sickle Cell Disease Association of America - Michigan Chapter Board of Directors Chairperson Kym L. Worthy Prosecutor, Wayne County District Jeffrey Sherbow, Esq, 1st Vice Chair, Attorney, Sherbow Law Office Ms. Cheryl L. Haskett, Treasurer Finance Director & Consultant, YDB, Inc. Kathleen Neumann, Secretary Retired Regional Director, Judson Center Sharada Sarnaik, M.D. , Assistant Secretary Retired Director, Comprehensive Sickle Cell Clinic Children's Hospital of Michigan Sonja L. Banks, CEO, International Dyslexia Association, Inc . Barbara Cushing, M.D. Retired Pediatric Hematologist, CHM LeWanda Gipson Deputy Director, Matrix Human Services Deborah Smith-Pollard, Ph.D. Associate Professor, U of M Dearborn Beverly Watkins Systems Administration, Toyota our board

OUR MISSION​  To maximize the life potential of individuals living with sickle cell disease To enable individuals with sickle cell trait to make plans 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

client feedback Volunteer Photo Release Client Feedback Your voice matters! 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. Thanks for sharing your feedback!

2019 Photo Gallery 2018 Photo Gallery 2021 photo galleries Awareness Campaign Launch This year for World Sickle Cell Day the Sickle Strong Adult Support Group hosted a lantern release to where we all could shine a light for individual living with sickle cell and to honor the memory of the beautiful ones we loss. Please enjoy these highlights! Thank You! (Is your photo/video missing from this collection? If so, email it to us.)

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.

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. Client assistance 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