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  • Original Client Feedback | -scdaami-

    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!

  • 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

  • Summer Camp | -scdaami-

    summer camp Our summer camp experience provides a unique opportunity for our children to gain self-confidence and independence. It also helps parents overcome issues of over protectiveness which may occur when raising a child with a chronic illness. North Star Reach Virtual Fall Family Camp North Star Reach is continuing to keep the health and safety of campers, families, staff and volunteers their top priority. Therefore, they are continuing with virtual Camp-at-Home programming this fall for family camps instead of on-site programming. Below is their fall camp schedule, and a brief online registration form is now live at the . Camp-At-Home website 2020 Fall Family Camp Schedule ​ September 25-27 General Session/Dance Marathon at the University of Michigan Family Camp (for children with a physical or developmental delay) ​ October 2-4 General Session/Sickle Cell Family Camp ​ October 16-18 General Session/Transplant Family Camp ​ October 23–25 General Session/Epilepsy Family Camp The hope is that a weekend of (virtual) Family Camp will give families just the right amount of camp community and mooseness to help build connections and create fun shared experiences together. Also, each family who registers before the proposed deadline will be receiving one of Moose’s famous camp-in-a-box Care Packages, which includes supplies for some creative activities, along with a special note from the mascot himself. Registration deadline for the full camp experience (including the Care Package) is September 11, 2020 for the first two sessions and October 2, 2020 for the last two sessions.

  • Our Impact | -scdaami-

    our impact of our 2018-19 Community Impact Report. Download a PDF

  • Sickle Cell Trait | -scdaami-

    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. or for more information. Call contact us on the CDC's sickle cell trait site. More info Learn more about the NCAA and sickle cell trait

  • Virtual Graduation Open House | -scdaami-

    2020 Virtual Graduation Open House SCDAA-MI is recognizing our graduating sickle cell warriors with a Virtual Open House on Saturday, June 20th as part of our World Sickle Cell Day weekend. Be sure to click the video to unmute the sound! We're proud of each of you! How to participate Eligibility: You must be an individual with sickle cell living in Michigan and a December 2019 or Spring/Summer 2020 graduate from high school, college or trade school. Children of individuals with sickle cell who are graduating within these time frames are also eligible. Here’s how you can join the celebration: ​ To help you prepare your answers, the form asks for your name, address, email, phone number, graduation date, school or college, degree, your plans after graduation (50 words or less), something you learned that you think could help another student with sickle cell (50 words or less), and optional questions, including any honors/awards/scholarships you earned, a song or motto that best describes you, a favorite affirmation or quote that motivates or inspires you, and social media links to any other school or family celebrations you’d like us to share on our social media. 1. to complete the 2020 Graduate Form. Click here ​ These can be casual, your formal or informal senior picture, or you in your cap and gown. Include your full name (as you’d like us to recognize you) in the body of the email. Optional: Include a 20-30 second video of yourself telling us how you thrive in spite of sickle cell and your hopes and plans for your future. 2. Email 1-2 photos of yourself to with “2020 Open House photo” in the subject line. info@scdaami.org Deadline to complete the and email us your photos (and optional video) is midnight Sunday, May 31st. No exceptions! 2020 Graduate Form The Virtual Graduation Open House video will be posted on our web site ( ) and to our social media accounts on June 20th. Facebook, Instagram and LinkedIn: @sicklecemichigan and Twitter: @sicklecellmi. www.scdaami.org If you have any questions or need additional information, please email us at or call 313-864-4406. info@scdaami.org

  • Services Overview | -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) 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. 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

  • Events | -scdaami-

    events Mark your calendar and join us for fun, educational, advocacy, and celebratory events throughout the year. (Virtual for now, of course.) SCDAA-MI Upcoming Events Download the full calendar of events . here Events subject to change. A weekend of awareness and action for 2020 World Sickle Cell Day FRIDAY, JUNE 19: #MaskUp4SickleCell for World Sickle Cell Day Grab a red mask and get ready to #MaskUp4SickleCell on World Sickle Cell Day. This is a day to create awareness and inspire action among individuals with sickle cell and the allies in our community. On Friday, June 19, put on your red mask (whatever red cloth you have handy to use), and head over to Facebook to post a selfie. Have fun and edit your photo with a note about what your mask represents for your life with sickle cell and then write a post about what's #BehindTheMask . Invite your friends and family to join in supporting the cause by posting themselves in red masks, too. We'll have a special frame you can use on Facebook. You can also take a screenshot of that photo to post on Instagram, Twitter and SnapChat. Be sure to tag @sicklecellmichigan so we can share your post. Watch our next week for the latest updates and how to join the full campaign. You can also to download a step-by-step guide on how to participate. social media pages click here SATURDAY, JUNE 20TH: Virtual Graduation Open House Congratulations Class of 2020! We're recognizing our graduating sickle cell Warriors with a Virtual Open House on Saturday, June 20 as part of our World Sickle Cell Day weekend. Do you know someone who should be included? To be eligible, the student must have sickle cell, live in Michigan and be a December 2019 or Spring/Summer 2020 graduate from high school, college or trade school. Children of individuals with sickle cell who are graduating within these time frames are also eligible. The graduate will need to complete an information form and send us photos no later than midnight, Sunday, May 31. For all the details, please visit our page. Spread the word! Class of 2020 SUNDAY, JUNE 21: Sickle Sabbath We invite you to mark our first Sickle Sabbath in your place of worship on Saturday, June 20, or Sunday June 21 (depending on when you observe your sabbath). While sickle cell disease predominately affects people of African, Latino and Middle Eastern descent, it can affect anyone of any ethnicity or nationality. All faiths and denominations are encouraged to join us in educating their congregations about sickle cell disease and the importance of knowing your sickle cell trait status. Sickle Sabbath flyers, fact sheets and a social media graphic are available on our web site at . Participation is free, however, love offerings that day are welcome to support our education, outreach and advocacy services. www.scdaami.org/sicklesabbath To join the event, talk with your worship leader or health ministry and share the Sickle Sabbath materials for distribution to your congregation members. We also encourage you to post and share the information on social media pages. For additional information, please or call 313.864.4406. email us Have questions? Need info? Want to send an idea for an educational topic? Contact us at or 313.864.4406. info@scdaami.org

  • Coronavirus | -scdaami-

    Information for our sickle cell community during the COVID-19 pandemic Information surrounding COVID-19 changes rapidly. We'll continue providing updates here. HEALTH ALERT: What our Sickle Cell Community Needs to Know About the Coronavirus (COVID-19) from SCDAA PATIENTS RETURN TO WORK LETTER PROVIDERS SCD COVID-19 REGISTRY Be prepared, not scared! We encourage sickle cell patients to follow the guidance provided in the national Sickle Cell Disease Association of America's Health Alert and for everyone to practice sanitation and cleaning practices advised by the CDC, including avoiding crowds and gatherings (events, parties, church, etc.). Be aware that the virus can live on some surfaces for 2-3 days, and on clothing for unknown periods of time . Contact your doctor if you experience symptoms or have been in contact with COVID-19. ​ Please contact us with questions or for assistance at (313) 864-4406 or (800) 842-0973 or info@scdaami.org. Do you need medical insurance? Or a primary care physician (PCP)? Are you feeling underprepared or overwhelmed? SCDAA-MI staff is still working to meet your needs - just remotely. Information about COVID-19 Michigan COVID-19 News and Information COVID-19 guidance for sickle cell from the Centers for Disease Control (CDC) COVID-19 Info from Michigan Health Departments SCDAA-MI worksite protocols If you've been exposed to COVID-19 Resources for daily life during the pandemic Click here for a ( ) of the guide. PDF . La guía está disponible en español to food, education, mental health resources and more. Links : Unemployment information, guidelines for returning to work, and physician letters Job help EMERGENCY PODCAST ON SICKLE CELL AND COVID-19 ​ If you need assistance navigating any of the services or resources listed above, please contact us: Detroit/SE Mich: (3 or 13) 864-4406 (800)-842-0973 Children's Hospital SC Clinic: (313) 745-5613 Sickle Cell Trait Counseling: (313) 451-0014 School/Job Assistance: (734) 494-2119 ​ 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: Jackson/Lansing Area: (616) 426-9259 (800) 842-0973 Saginaw/Flint Area: (989) 372-0256

  • Conditions | -scdaami-

    sickle cell conditions SCROLL Sickle cell disease is the most common heritable blood disorder in the U.S. It affects 100,00 people, most of them living healthier and longer lives than would've been possible one or two generations ago. The disease is chronic, complex and challenging. But at the SCDAA-MI, we are resilient and resourceful - committed to improving lives. We're here to win.

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

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© 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.