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  • 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 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. BACK TO THE TOP 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 ​ 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

  • Sanguine Research Trial | -scdaami-

    Click Here to Participate

  • News & Multimedia | -scdaami-

    media Keep up with SCDAA-MI news, articles and information from a variety of outlets on issues affecting sickle cell, and videos and webinars to keep you up-to-date about what's happening in the #sicklecell community. ​ SCDAA-MI OUT & ABOUT SCDAA-MI World Sickle Cell Day press release 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 Read more ​ 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. NHLBI Speaker "Thank you National Heart, Lung, and Blood Institute (NHLBI) for having me alongside these devoted advocates as a panelist for the “What is a Meaningful Cure?” panel discussion hosted by Dr. Wanda Whitten-Shurney . #CureSCI #sicklecell Thanks Teonna Woolford for the pic!! — with Velvet Brown-Watts , André Marcel Harris and Cassandra Trimnell at Hilton Washington DC/Rockville Hotel and Executive Meeting Center ." NEWS FROM AROUND THE COMMUNITY Toledo's Promedica Hospital has added an adult sickle cell clinic, the first of its kind in northwest Toledo. - WATCH & READ Get the clinic's info here Could gene therapy cure sickle cell anemia? - WATCH FDA approves first targeted therapy to treat patients with painful complication of sickle cell disease - READ FDA Approves Oxbryta™ (Voxelotor), the First Medicine Specifically Targeting the Root Cause of Sickle Cell Disease - READ Sickle Cell Disease Treatment Has Oklahoma Roots - READ

  • 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 >

  • 2021 Gallery | -scdaami-

    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.) ​ ​ ​

  • Volunteer | -scdaami-

    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

  • Jobs/Careers | -scdaami-

    Career Opportunities at SCDAA-MI The Sickle Cell Disease Association of America – Michigan Chapter (SCDAA-MI), offers education, assistance, and advocacy to individuals living with and families affected by sickle cell disease. SCDAAMI provides counseling, support groups, referrals for financial and medical help, and connects students and job seekers with school, college and employment assistance, in addition to raising public awareness and sending children to summer camp each year. The agency also coordinates newborn screening for babies born in Michigan and conducts on-site blood testing to diagnose sickle cell trait and disease. All SCDAA-MI employees play a vital role in achieving our mission to improve the quality of life for people with sickle cell. Please click on the job availability below to join our team! ​ We currently do not have any open positions available at this time. Please check our website periodically for open positions. ​ ​ ​ The Sickle Cell Disease Association of America - Michigan Chapter is an Equal Opportunity Employer. jobs/ careers

  • 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! 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

  • SCD Transition | -scdaami-

    SCDtranstion support We want to make it easier to find credible, useful information that helps make it a little easier to live with sickle cell. Ideas for content are welcome! CLINICAL TRIALS Research into treatments for sickle cell are at an all-time high. Once a new possibility is discovered, it moves through a series of further studies and approvals that include clinical trials. Without the brave patients who come forward to test new approaches, new treatments couldn't make it to market. Here's a list of NIH-funded trials for sickle cell currently underway. Source: National Institutes of Health SICKLE CELL GLOSSARY A diagnosis of sickle cell comes with its own language. If you're newly-diagnosed, the words can be overwhelming. As research evolves and new discoveries about living with the disease come to light, new terms will be added to conversations. 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 Do you know what your doctor just said to you? Even if you ask for clarification on site, you might forget a few things before you reach your next destination. Or you may be surfing the internet and come across unfamiliar terms used in your medical care. This dictionary provides definitions in every day language to help you better understand your condition. Source: Medical Library Association 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 CDC OPIOID CLARIFICATION FOR SCD In February 2019, the CDC clarified its opioid guidelines in a letter to ASH stating its guidelines were not intended to manage the complexities of sickle cell. The CDC instead refers providers to the NIH guidelines for proper care. Access the full letter. Source: American Society of Hematology NIH - TREATMENT GUIDES FOR SCD Click the image for a PDF of the full NIH guidelines and recommendations for the management of sickle cell disease (161 pages). Click the yellow button to go directly to the full document on the National Institutes of Health (NIH) web site. Source: National Institutes of Health 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 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 Sociiety of Hematology 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. Other informational resources

  • Elements | -scdaami-

    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.

  • 2020 Gallery | -scdaami-

    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!)

  • 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