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  • Sickle Cell Michigan Detroit - SCDAAMI

    Thank you 2023 Sponsors for helping us reach our goal!! Sickle cell is a complex biopsychosocial condition affecting every blood vessel, organ, and system in the body. While its severity impacts each individual uniquely, sickle cell’s most common visible presentation is excruciating, unpredictable pain. However, the condition’s less visible complications of continual hemolytic anemia and vascular and organ damage are silent, but life-shortening, ramifications suffered by every individual with sickle cell. To play, press and hold the enter key. To stop, release the enter key. SCDAA-MI provides education, assistance, and advocacy for individuals living with and families affected by sickle cell disease. Our services are available throughout Michigan and span lifetime needs. OPPORTUNITIES TO LEARN - SHARE - DISCOVER CHEAT CODES STATE OF SICKLE CELL DISEASE EXPLORE TREATMENTS WAYS TO ENGAGE WITH SCDAA-MI NEWS & MEDIA SPONSORS & ALLIANCES QUESTIONS ABOUT HYDROXYUREA WE'RE NOW WORKING REMOTELY TO HELP PROTECT OUR COMMUNITY. PLEASE CALL FOR ASSISTANCE. THANK YOU! DETROIT OFFICE 18516 James Couzens Fwy Detroit, MI 48235 Mon - Fri: 9 a.m. - 5 p.m. ​​Special Event Hours as Posted CONTACT US Detroit/SE Mich: (313) 864-4406 or ( 800) 842-0973 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 SATELLITE OFFICES Adult Clinic Caseworker: (313) 864-4406 Benton Harbor/Kalamazoo Area: (269) 927-5629 Grand Rapids/Muskegon Area: (616) 788-9816 Jackson/Lansing Area: (517) 249-3528 Saginaw/Flint Area: (989) 372-0256

  • Services | -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) 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

  • Patient Support | -scdaami-

    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

  • Donation Page | -scdaami-

    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. Thank you for your support! donation page Donate Now How much are you donating? $15 $25 $50 $75 $100 Other First Name Last Name I'd like this donation to remain anonymous Company Street Address City, STATE Zip Email Address Donating in honor of: DONATE Thank you for helping us improve the lives of people with sickle cell!

  • Vendor Payment Confirmation | -scdaami-

    Vendor Payment Confirmation 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. Thank you for completing your Vendor/Exhibitor Reservation for our 2020 Sickle Cell Matters Virtual Walk! Your support of 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. ​ Tracie Conic , Director of Client Services at SCDAA-MI, coordinates vendor and exhibitor activities for the Walk and will contact you with further instructions and information. You will receive an electronic payment receipt from PayPal. Please save your receipts. Thank you for your support!

  • SickleCell911 | -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. " 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

  • SCM Walk Engagement | -scdaami-

    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

  • About Us Overview | -scdaami-

    about us The Sickle Cell Disease Association of America - Michigan Chapter has been a leader in the sickle cell community since 1971. We are committed to improving the lives of people with sickle cell by keeping our mission at the center of everything we do. ​ OUR HISTORY SICKLE CELL CENTER Our success all started with the vision of Dr. Charles F. Whitten. His daughter Dr. Wanda Whitten-Shurney continues the work. Read More > OUR IMPACT EVERYBODY COUNTS Numbers, numbers, numbers. But here at SCDAA-MI, every statistic represents a real person we fight for every day. Read More > OUR BOARD LEADERSHIP MATTERS Our board members provide mission and operational oversight with passion, dedication, and expertise. Read More > OUR STAFF 200 YEARS The SCDAA-MI staff brings more than 200 years of experience to its mission of changing the world of sickle cell. Read More >

  • 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!

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