Search

64 results found

  • Conditions Overview | -scdaami-

    sickle cell conditions 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. SCROLL

  • SCM Walk Team Set Up | -scdaami-

    How to Set Up Your Walk Team 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 annual Sickle Cell Matters Walk brings us new friends and new donors every year. But, we rely on our current supporters to get the word out and introduce our work to others. This year we’ve set targets of 10 major sponsors, 100 fundraisers/teams and 1,000 participants to help us reach our fundraising goal of $100,000. Here’s how you can help us get there. STEP 1 - Donate or join/create a fundraising team To donate: Click the DONATE button at the . You can then use the arrow to select a specific team to donate to or donate to the overall walk, choose how much you'd like to donate, and whether it will be a one-time or recurring donation. Follow the prompts from there. top of the page To join or create a team: Click the JOIN button at the . You'll then have the option to join an existing team or start your own team. top of the page When you join a team, the system automatically creates a fundraising page for you that you can share with others. If you do not want to create your own fundraising campaign, close the popup box and click the donate button instead. To create your own team, you'll need a team/campaign name, fundraising goal (the default is set at $1,000, but you can change that) and a story about your team. The default story is the one used by the overall Walk campaign. From there, you'll follow the prompts to complete team set up. Registration is now optional. If you choose to register, here are the instructions:​ ​ Click register and follow the self-guided instructions to select your tickets (16 & over ($20), child ($10), and young child (free). Enter your buyer and payment info. You’ll be offered the options to fundraise as a team, fundraise as an individual, or continue without fundraising. If you select fundraise as an individual, you’ll need to enter a campaign name and your goal. If you select fundraise as a team, you can choose to join or create team: Join gives you a list of teams you can choose from. To create a team, you need to enter a campaign name (your team name) and your goal. You’ll then be guided to finalize your purchase. This will complete your registration as a Walk participant and team fundraiser. STEP 2 - Customize Your Team Campaign OPTION 1 - You created your team through your Walk registration or by clicking the Join button. ​ You’ll receive email receipts for your payments and a separate email confirming your team set up. To manage your team, you’ll need to click the Manage Campaign button in the email, which takes you to the GoFundMe Charity web page. Sign up for an account using the email you registered with. You’ll then be able to see the campaign – team – you started. Now you can customize your team page and invite others to join your fundraiser as team members. Add photos and videos, personalize your team’s story, and send customized update emails to your team. Tools for Managing Your Team (You'll need to be logged into your account to view this information.) OPTION 2 - You're trying to return to your team page (1) Go to : our Walk campaign page on Charity GoFundMe (a) If you aren’t already logged in, click the graphic in the upper right hand corner of the page. You’ll get a drop-down menu. Click SIGN IN and enter the email and password you used to create your team campaign. From there, go back to the graphic in the upper right hand corner. Click on CAMPAIGNS in the drop-down menu. OR (b) If you’re already logged in, click the graphic in the upper right hand corner of the page. You’ll get a drop-down menu. Click on CAMPAIGNS in the drop down menu. (2) Your team should appear on the page. Click EDIT. A Team Page box will appear. Click EDIT again. (3) Under the tabs you can do the following: CONTENT: you can add photos, video, your story and your goal. Be sure to click SAVE! DESIGN: You can create your Facebook share post by adding a photo and brief text. Be sure to click SAVE! SETTINGS: Will give you the direct URL for your team (e.g. charity.gofundme.com/cue-the-cure), and decide whether you want to allow people on your team to create their own fundraisers, share your campaign, and more. Be sure to click SAVE! You’ll find additional tools to . ( ) manage your campaign here https://charitysupport.gofundme.com/hc/en-us/articles/360035656131-Tools-for-managing-your-teams- STEP 3 - Start Fundraising You’ve set your goal, now how to you reach it? Exceed it? ​ Do you work for a company that sponsors events or activities? Offer them the opportunity to support your team or . sponsor the Walk Invite your friends, family members, social groups, clubs, parents of your child’s friends, co-workers, etc., to join your effort. Do you have a skill you can put to work to help raise money? Something you can do virtually while we’re staying home and staying safe? Hustle lessons, tutoring, voice or music instruction, baking (customers can pay you with CashApp or PayPal and pick up items from your porch when they go out grocery shopping or vice versa). Map out your participant strategy. For a $500 team goal, you could target 35 people at $15 each, 25 people at $20 each; 20 people at $25 each; 15 people at $35; 10 people at $50, 5 $100 donors, or one very generous $500 supporter. More than likely, your team will use a variety of donor amounts to reach its goal. Invite five people to (1) each donate $20 and (2) each invite another five people who’ll donate $20, and so on. Hold a shoe size fundraiser: Email friends and family members to donate the amount of their shoe size to join your team. (If you wear a 10, you donate $10, etc.) Use the built-in links to promote your team's campaign on Facebook and Twitter. Check our frequently to see how your campaign is doing and what the competition is up to. leaderboard For additional information, please contact the following SCDAA-MI staff for specific assistance or call (313) 864-4406: Registration or team setup - email Kristal Johnson Sponsorships - email Stefanie Worth Vendor Information - email Tracie Conic

  • 2019 Gallery | -scdaami-

    photo galleries 2019 event gallery 2018 Photo Gallery 2020 Photo Gallery Awareness Campaign Launch Celebrating 43 Years of Helping to Break the Sickle Cycle! The Cynthia Coles Circle 2019 Annual Sickle Cell Benefit Luncheon Saturday, May 18,2019 Guest Speaker Lt. Governor Garlin Gilchrist III Celebrating World Sickle Cell Day June 19, 2019 Thank you to all of our supporters! The Sickle Strong Empowerment Circle presents its 1st Annual Balloon Release June 19, 2019 World Sickle Cell Day Belle Isle Park Detroit, Michigan

  • 2019 Sickle Cell Matters Annual Walk | -scdaami-

    2019 Sickle Cell Matters Walk Become a Sponsor Become a Vendor

  • SCDAA-MI E-Newsletters | -scdaami-

    Catch up on news and information from the SCDAA-MI E- newsletters Read the latest news SUBSCRIBE TO OUR E-NEWS September 2020 Special Edition Read web version ​ Download PDF World Sickle Cell Day Alert Read web version ​ Download PDF January 2020 (Winter) Read web version ​ Download PDF Summer 2020 (August) Read web version ​ Download PDF Spring 2020 (April) Read web version ​ Download PDF November 2019 Read web version ​ Download PDF

  • SCDAA MARAC advisories | -scdaami-

    News media releases and alerts from SCDAA-MI press releases Advisories from SCDAA's Medical and Research Advisory Committee - SHOW THIS TO YOUR SCHOOL ADMINISTRATOR TO HELP THEM HELP YOU. ​MARAC Advisory Statement on (July 31, 2020) Post-secondary and Boarding School Education in the Age of COVID-19 - SHOW THIS TO YOUR EMPLOYER TO HELP THEM HELP YOU MARAC Advisory Statement for (July 30, 2020) SCD Patients Who are Teachers, Administrators, and Other Support Staff during School Reopening - SHOW THIS TO YOUR CHILD’S SCHOOL PRINCIPAL TO HELP THEM HELP YOU SCDAA MARAC Position on (July 27, 2020) 2020 School Reopening MARAC Advisory Statement Regarding (April 30, 2020) SCD Patients during the time of “Reopening” the U.S. Economy (May 27, 2020) Sickle Cell Disease and COVID-19: Provider Advisory: An Outline to Decrease Burden and Minimize Morbidity (April 18, 2020) Social Adjustments & Response to COVID-19 - SHOW THIS TO YOUR MEDICAL PROVIDERS TO HELP THEM HELP YOU (March 17, 2020) Health Alert for People with Sickle Cell Disease and their Caregivers , SCDAA Chief Medical Officer (March 13, 2020) A Health Note From Dr. Biree Andemariam ​

  • About Us | -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 >

  • Advocacy and Legislation | -scdaami-

    Your voice matters in the election process. The representatives we choose make decisions that affect access to healthcare, regional transportation, insurance laws, disability protections, prescription pricing and more. Join us as we speak out on behalf of individuals living with sickle cell and the legislation that affects them. ADVOCACY TRAINING Would you like to be able to join us on an advocacy meeting to speak with a legislator? Below, you can watch a training webinar presented to our sickle cell advocates by the Every Life Foundation for Rare Diseases. (90 minutes, mp4 webinar) OUR ADVOCACY PARTNERS Sickle Cell Disease Association of America Rare Disease Legislative Advocates Every Day Life Foundation Health Can’t Wait Coalition American Society of Hematology ARE YOU READY TO VOTE? November Presidential Election - Tuesday, Nov. 3 The deadline to register to vote in this year’s November presidential election is Oct. 23 for any form but in-person. Last day for in-person registration is election day, Nov. 3. ​ To be eligible to vote in Michigan, you must be: A Michigan resident (at the time you register) and a resident of your city or township for at least 30 days (when you vote) A United States citizen At least 18 years of age (when you vote) Not currently serving a sentence in jail or prison Learn more about voting in Michigan . here ​ Check your voter registration status here . ​ Register online . here Absentee voting “Due to the constitutional amendment passed by voters in 2018, all eligible and registered voters in Michigan may request an absent voter ballot without providing a reason. They can visit their local clerk’s office for an absent voter ballot application or download one at ” Michigan.gov/Vote ​ Michigan ballot drop locations You can take your absentee ballot to the drop box in your jurisdiction and through the election process. track your ballot advocacy & legislation Current issues we’re working on include: The American Society of Hematology wants to ensure the needs of individuals living with sickle cell are addressed through Medicaid in COVID-19 stimulus legislation. . Learn more SB612 (Michigan) - A bill to change legislation around insurance preauthorization and step requirements. and . (Complete the action form to create a pre-written email that will be sent directly to your senator.) Learn more take action New Medicaid work requirements Securing coverage for new sickle cell treatments (We'll keep you posted!) Other recent issues “The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018” (federal) – Passed in December 2018 Michigan's medical marijuana law - View a , what conditions are covered by the bill, and its restrictions summary of the bill Have you completed your 2020 Census?​ Data gathered from the 2020 Census will help inform funding decisions for school lunches, infrastructure, first responders and more. Your answers are confidential and there are no citizenship questions. Take 10 minutes to answer the census today DO YOU KNOW WHO REPRESENTS YOU? You can and enter your address to find your local, state and federal elected officials along with their names and contact information. click here to see Michigan's legislative districts Use the map . World Sickle Cell Disease Awareness Day in Michigan - June 19, 2020 2020 World Sickle Cell Day received legislative support this year as Rep. Ronnie Peterson introduced House Resolution #280 declaring June 19, 2020 as World Sickle Cell Awareness Day in Michigan. Rep. Peterson also introduced a bill to create a sickle cell license plate for Michigan. The bill received outstanding bi-partisan support. ​ We are deeply grateful for these actions from our elected officials and the members of the Michigan Legislative Black Caucus who were able to join us at the capital. #BlackPatientLivesMatter

  • Press Releases | -scdaami-

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

  • Patient Support | -scdaami-

    patient support 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. Have you tested positive for COVID-19? Or do you have a cough with a fever? You can call Dr. Z (Dr. Ahmar Zaidi) at 248-797-9936 or Dr. Mike (Dr. Mike Callahan) at 248-953-5250. Please respect the docs' time and dedication and only reach out to them if you’re diagnosed with Coronavirus or have a cough + fever. MICHIGAN WARRIORS ONLY PLEASE: ​ We appreciate them being available to the community this way! HEALTH ALERT FROM THE SICKLE CELL DISEASE ASSOCIATION OF AMERICA PATIENT INFO RETURNING TO WORK PROVIDER INFO 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 to take someone with you to act as your advocate. Let the hospital staff know that's what they're there for. you have the right ​ We realize not everyone is familiar with the proper treatment for sickle cell. This can help you receive SAFE(R) care. uestions or feedback. Contact us with q 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! 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 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 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 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 Looking for a hematologist? Try this . (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. zip code-based search Other informational resources

Sickle Cell Disease Association of America -
Michigan Chapter, Inc.

18516 James Couzens Fwy, Detroit, MI 48235

(313) 864-4406 OR (800) 842-0973

info@scdaami.org

  • LinkedIn
  • Facebook
  • Twitter
  • YouTube
  • Instagram

© 2020 Sickle Cell Disease Association of America - Michigan Chapter, Inc. All rights reserved.

SCDAA-MI is a qualified 501(c)(3) tax-exempt organization. Tax ID Number: 38-1963640.