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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

about us The Sickle Cell Disease Association of America - Michigan Chapter has been a leader in the sickle cell community since 1971. We are committed to improving the lives of people with sickle cell by keeping our mission at the center of everything we do. OUR HISTORY 200 YEARS Our success all started with the vision of Dr. Charles F. Whitten. His daughter Dr. Wanda Whitten-Shurney continues the work. Read More > OUR IMPACT EVERYBODY COUNTS Numbers, numbers, numbers. But here at SCDAA-MI, every statistic represents a real person we fight for every day. Read More > OUR BOARD LEADERSHIP MATTERS Our board members provide mission and operational oversight with passion, dedication, and expertise. Read More > OUR CEO SICKLE CELL CENTER Our CEO brings passion and drive by seeking to bring awareness in the community and caring for individuals living with sickle cell disease. She maximizes profits and fulfills leadership skills to carry out the mission of the organization. Read More >

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!

Since we have announced our Save the date for our 2021 Sickle Cell Matters Awareness Walk, We look forward to your participation! Here are highlights from last year's walk..... Enjoy!!!! I'm a paragraph. Click here to add your own text and edit me. It's easy. The Sickle Cell Matters Virtual Walk program starts at 10 :15 a.m. EST here and on Facebook @SickleCellMichigan! YOUR GUIDE TO THE daY* *Program times are approximate You can still donate to the 2020 Sickle Cell Matters Virtual Walk through September 30th. We appreciate your support! Donate to the cause or a team Click the image to download a PDF version of the day's agenda. 10:15 - WELCOME REMARKS SCDAA-MI CEO & Medical Director, Dr. Wanda Whitten-Shurney Honorary Chair, Deborah Smith-Pollard Honorary C-Chair, Dr. Ahmar Zaidi, "Dr. Z." 10:21 - #SICKLESLIDE Join Dr. Shurney and the staff of the Bottomless Toy Chest in the #SickleSlide 10:24 - WARRIOR RECOGNITIONS Tribute to Fallen Warriors - Those We've Lost 2020 Graduation Open House Celebration Salute to Legacy Warriors - Those 40 & Over 10:37 - MEET OUR SPONSORS Greetings from Medunik USA & What You Should Know About Sickle Cell Anemia Wayne County Community College District Tour Emmaus Life Sciences - About Endari 11:14 - PRODUCTS & SERVICES Pfizer - Functional Fluidics Sick Cells - Versiti - Terumo 11:16 - GIVEAWAYS & AWARDS 1st & 2nd Place Fundraising Teams (as of 9/12) Most Team Members (as of 9/12) T-Shirt/Poster Design Contest Winner Giveaway Winner From All Participants (as of 9/5 11:20 - TIME TO MOVE! Now's the time to move how you choose. Take your walk, do a little yoga, or head out to your ballot box to drop off your election ballot. Be sure to post your photos u sing #SickleCellMattersWalkMI #SickleCellMatters #SickleCellLivesMatter Dr. Wanda Whitten-Shurney Deborah Smith-Pollard Dr. Ahmar Zaidi Thank you for making our 2020 Sickle Cell Matters Virtual Walk a huge success! DONATE NOW Our 2020 Sickle Cell Matters Walk sponsors! Meet the Sponsors

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

2019 Sickle Cell Matters Walk Become a Sponsor Become a Vendor

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

sickle cell disease Living with sickle cell disease isn't easy, but proper knowledge about the condition will help patients live a longer, healthier life and guide trait carriers in making educated child-bearing decisions. Symptoms & Complications Sickle cell trait Top A history of sickle cell What Is Sickle Cell Disease? Sickle cell is an inherited blood disorder in which the red blood cells change their shape. It is a genetic abnormality and is caused by an abnormal type of hemoglobin, called hemoglobin S or sickle hemoglobin. Normal red blood cells have a disc-like shape, but in patients of sickle cell disease, they take on a crescent or sickle shape. Normal blood cells carry oxygen to the body, but altered cells cannot move easily through your blood vessels, which affects the oxygen supply. These altered cells cannot carry oxygen properly because when they release oxygen, it sticks together and changes the shape of the red blood cell. Prevalence of Sickle Cell Disease Sickle cell has existed for thousands of years and millions of people around the world suffer from the disease, but it's more common in people with an African bloodline. It is also quite common in people whose ancestors come from the Arabian Peninsula; Mediterranean countries such as Turkey, Greece, and Italy; Central America; Spanish-speaking regions in South America; and parts of the Caribbean. As a whole, it affects approximately 100,000 Americans and is the most common heritable blood disorder in the U.S. How Do You Inherit Sickle Cell Disease? Sickle cell disease is not contagious – you're born with it. A child may have this disease when he/she inherits one hemoglobin S gene from each parent. About 1 in every 365 African American babies are born with sickle cell each year and. While the disease primarily affects African Americans and people of color - including individuals of Hispanic and Middle Eastern descent, anyone can inherit sickle cell if the genetics are in place. There are also other sickle cell mutations, including Hemoglobin SC disease and hemoglobin Sβ thalassemia, the two most common. Sickle Cell Trait 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 with their health. Learn more about sickle cell trait sickle cell trait Artwork copyright Ebony.com . Explore More In-Depth Information American Society of Hematology ASH Centers for Disease Control CDC National Institutes of Health NIH Back to the top Sickle Cell Disease: Milestones in Research and Clinical Progress (REVISED September 2018) - download here History A History of Sickle Cell Download the PDF here Back to the top

We thank you for your service! Tonya Ashwood-Malone, Data Manager Congratulating Tonya Malone on 30 years of dedicated service to the Sickle Cell Disease Association of America, Michigan Chapter, Inc. We appreciate you.

symptoms& complications Info You Should Know: Symptoms and Complications of Sickle Cell Disease (Although the language here is directed to parents, this list applies to both children and adults with sickle cell. When in doubt, please contact your medical provider or go to the hospital.) NIH NHLBI g uidelines for treating complications Anemia Your baby may have this condition if he/she lacks the number of healthy blood cells required to carry sufficient oxygen to the rest of the body. Some of the most common symptoms include paleness, low energy, breathing problems, and slower growth. Treatment: The doctor will consider the severity of the symptoms to suggest a treatment plan, but they may rely on antibiotics and blood transfusion to treat the condition. Acute Chest Syndrome It could be an extremely painful and serious situation because it restricts blood flow to the lungs. Some common signs and symptoms include chest pain, breathing problems, and fever. Treatment: The doctor may recommend treatment with blood transfusions, antibiotic medicine, pain medicine, and oxygen to help improve breathing. Pain Pain is common and happens when sickled cells restrict blood flow. Pain can be anywhere in the body – it can be in organs and joints as well. The pain may continue for a few hours or extend to days and even weeks. It is important to give your child plenty of fluids, maintain temperature, and keep them from high altitudes to limit pain episodes. Treatment: Some of the most common treatment options include heating pads, prescription pain medicine, OTC pain relievers like ibuprofen, and hydroxyurea to help produce a specific type of hemoglobin. Extended pain requires hospitalization and narcotic medications. Hand-Foot Syndrome A child may experience pain, coldness, or swelling in the feet and hands when the sickle cells affect the blood supply to these limbs. Treatment: The doctor may rely on certain pain-relieving medicine to treat the symptoms. Giving your child plenty of fluids may also help. Splenic Crisis Sometimes, sickled cells accumulate in the spleen and clog it. This leads to swelling that prevents the spleen from filtering blood in the body. Specific signs include weakness, pain on the left side of the belly, and a rapid heart rate. Treatment: The usual treatment option is blood transfusion. The doctor may also consider removing the spleen iif splenic crisis becomes a regular issue. Infection Your child may have to fight with several infections including the infection of the lining of the brain and lung infection. Signs and symptoms include breathing problems, fever, coughing, headaches, and pain in the bones. An oral temperature over 100.3 requires a trip to the emergency room to help prevent bacterial sepsis. Treatment: It is important to prevent an infection from happening by staying up to date on vaccinations. If your child gets an infection, your doctor may recommend some antibiotics to clear the infection. Taking antibiotics regularly may help prevent infections when your baby is between 2 months and 5 years of age. Stroke Those altered red blood cells may restrict blood flow to the brain, which sometimes leads to a stroke. The most common symptoms include weakness on one side of the body, severe headache, and changes in speech, alertness, hearing, or vision. Treatment: Your child's healthcare provider will first notice these symptoms and then ask for an ultrasound, called Doppler ultrasound, to determine your child's risk for stroke. Vision Loss Blindness and other vision problems may happen when these cells block blood supply to your child's eyes. Sometimes, the cells block the blood flow to a specific part of the brain that leads to vision loss. Treatment: A regular eye exam with an ophthalmologist is necessary to avoid such issues, but your doctor may also recommend additional eye treatment to prevent further damage. More on major complications and their treatments from the CDC

News media releases and alerts from SCDAA-MI press releases Advisories from SCDAA's Medical and Research Advisory Committee Sickle Cell Disease Association of America Medical and Research Advisory Committee COVID-19 Update “December 23, 2021 – SCDAA MARAC reminds the sickle cell community that the COVID-19 pandemic is having another increase in infections. New variants like omicron are emerging, as is common for RNA viruses, and vaccination rates need to consequently improve. Vaccinations can protect against severe illness. A new mediation might also help as early treatment for infected individuals.” Further details/recommendations on website: https://www.sicklecelldisease.org/2021/12/23/marac-advisory-statement-update-about-covid-19/ MARAC Advisory Statement on Post-secondary and Boarding School Education in the Age of COVID-19 (July 31, 2020) - SHOW THIS TO YOUR SCHOOL ADMINISTRATOR TO HELP THEM HELP YOU. MARAC Advisory Statement for SCD Patients Who are Teachers, Administrators, and Other Support Staff during School Reopening (July 30, 2020) - SHOW THIS TO YOUR EMPLOYER TO HELP THEM HELP YOU SCDAA MARAC Position on 2020 School Reopening (July 27, 2020) - SHOW THIS TO YOUR CHILD’S SCHOOL PRINCIPAL TO HELP THEM HELP YOU MARAC Advisory Statement Regarding SCD Patients during the time of “Reopening” the U.S. Economy (April 30, 2020) Sickle Cell Disease and COVID-19: Provider Advisory: An Outline to Decrease Burden and Minimize Morbidity (May 27, 2020) Health Alert for People with Sickle Cell Disease and their Caregivers (March 17, 2020) - SHOW THIS TO YOUR MEDICAL PROVIDERS TO HELP THEM HELP YOU A Health Note From Dr. Biree Andemariam , SCDAA Chief Medical Officer (March 13, 2020)