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  • Donation Page | -scdaami-

    Your gift to the Sickle Cell Disease Association of America - Michigan Chapter helps ensure that counseling, educational, medical, and basic needs services are addressed for people with sickle cell. By supporting our work, you help improve lives. Thank you for your support! donation page Donate Now How much are you donating? $15 $25 $50 $75 $100 Other First Name Last Name I'd like this donation to remain anonymous Company Street Address City, STATE Zip Email Address Donating in honor of: DONATE Thank you for helping us improve the lives of people with sickle cell!

  • 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. Summer Camp 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 . ​ ​

  • COVID19 Family Resources | -scdaami-

    Additional resources to support your needs during the COVID-19 pandemic Food Mental Health Internet Talking With Kids Education Ways to Connect 2-1-1 Top Job Info Locate various community resources by zip code https://navigator.familydoctor.org/ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Food Locate food banks by zip code https://www.feedingamerica.org/find-your-local-foodbank Several school districts are offering “grab and go” food pick up for students during the COVID-19 outbreak. These organizations are assisting as well: Gleaners Food Bank Forgotten Harvest Yad Ezra Lighthouse Food Pantry City of Detroit Food Pickup ​ Mental Health 24/7 365 Disaster Distress Hotline to assist with emotional distress due to pandemic Free online COVID-19 support group Coping With Coronavirus Anxiety - Reading from Harvard Health Be The Match® is now offering free counseling services to sickle cell warriors and their loved ones. One of their licensed social workers can provide you with one-on-one support for personal and emotional issues. Request a connection today. ​ ​ Internet & Device Access FCC program for eligible households to provide low cost telephone and broadband internet service (Michigan is a participating state) Some internet providers are offering free services to low-income families and households with students. Free Comcast Xfinity internet: Comcast Xfinity is currently offering its Internet Essentials program free for two months to new customers. The internet provider is also automatically increasing speeds for all Internet Essentials customers. Comcast Xfinity Wi-Fi hotspots are also open and free to use by anyone. Free internet for students from Charter Spectrum: Households with students K–12 or university students can sign up for a new Charter Spectrum internet account to get the first two months of internet with speeds up to 100 Mbps for free. Installation fees will be waived for those who qualify for the offer. Call 1-844-488-8395 to enroll. Spectrum Wi-Fi hotspots are also currently open and free to use. Free internet for students from Altice: Altice internet providers Suddenlink and Optimum are offering 60 days of free internet service for households with K–12 or college students. Internet speeds are up to 30 Mbps if you do not already have access to a home internet plan. To sign up, call 1-866-200-9522 if you live in an area with Optimum internet service, or call 1-888-633-0030 if you live in an area with Suddenlink internet service. Free low-income internet from Cox: Until May 12, 2020, Cox is offering the first month of its low-income internet program, Connect2Compete , for free. The internet service is also providing free phone and remote desktop support for technical support during that time. AT&T: https://www.att.com/help/covid-19/ Talking with your children about COVID-19 Talking to Children About COVID-19: National Association of School Psychologists Coping with Stress During Infectious Disease Outbreaks : Substance Abuse & Mental Health Services Administration Talking with Children about Coronavirus : CDC Helping Children Cope with Emergencies : CDC How to Talk to Your Kids About Coronavirus : PBS Kids Should children be gathering while school is not in session? CDC Recommendation : Discourage children and teens from gathering in other public places while school is dismissed to help slow the spread of COVID-19 in the community Coronavirus is Here. Should Kids Still Have Playdates ? Fatherly Magazine ​ Educational Websites and Apps Guidance and a variety of good online resources are available on the Common Sense Media website. ​ All Subjects ABC Mouse (Free 30 day trial) Khan Academy Khan Academy Kids Wonderopolis Parent Toolkit Literacy Scholastic Learn at Home Starfall Audible (free audio stories for kids) Math Code.org Tynker - Free coding courses for all grades Solve Me Puzzles - puzzles that use mathematical thinking PBS Kids Math Games Science & Social Studies Mystery Doug National Geographic Kids Science Journal for Kids ​ Enrichment Activities ​ Fun Games PBS Kids Typing.com Movement & Mindfulness Headspace Go Noodle Mindfulness Moments Virtual Tours Museum Virtual Tours NASA Images and Video Library Cranbrook Art Museum virtual tour ​ Ways to connect Adobe Connect (Free 90 day trial) Facetime Skype Google Hangouts ​ ​ ​ United Way 2-1-1 United Way for Southeast Michigan's 2-1-1 service provides referrals to programs in Wayne, Oakland, Macomb, Washtenaw, Monroe and Lapeer counties, connecting users with more than 30,000 service providers throughout the state. You can get information online at United Way 2-1-1 , or by dialing 2-1-1 (or 1-800-552-1183 ). ​ ​ Returning to Work Michigan information for employers and employees Michigan guidance for manufacturing workers returning to work Template letters from SCDAA for physicians to provide patients and caregivers ​ Food resources Mental Health resources Internet and device access Talking with your kids Education and enrichment Ways to connect United Way 211 Back to the top Back to the top Back to the top COVID-19 Information From Michigan Health Departments ​ Berrien County here Genesee County here Ingham County here ​Kent County here ​Lenawee County here Macomb County here Michigan Department of Health & Human Services here Oakland County here Saginaw County here Washtenaw County here Wayne County here MI Health Depts Job Info

  • Symptoms and Complications | -scdaami-

    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 ​

  • Our Services | -scdaami-

    our services Top of Page Newborn Screening Testing & Genetic Counseling Case Management Career Development Community Education Case Management Career Development Newborn Screening Newborn Screening As of July 1987, every baby born in the state of Michigan is tested for sickle cell conditions by the Michigan Department of Community Health. This identification allows infants to receive lifesaving penicillin prophylaxis before the disease might be diagnosed from the occurrence of sickle cell disease symptoms. Newborn screening also enables families to receive early disease education and be aware of critical signs and symptoms that may require medical/lifesaving intervention. ​ When an infant is diagnosed with sickle cell trait, the agency provides information to the family about the significance of the condition and free testing for other family members if desired. Return to top of page SCDAA-MI also helps with: Obtaining the required confirmatory test Education and genetic counseling Penicillin management Access to appropriate medical care Testing & Genetic Counseling The function of the testing program is to determine whether a person is at risk for having a child with sickle cell disease. The non-directive counseling program provides detailed and accurate information about sickle cell trait and sickle cell disease for those identified as carriers. This will enable individuals and couples to make informed decisions that they believe are in their best interest regarding family planning. Return to top of page Offices is closed to the public due to Covid. Remote Hours M-F 9 a.m. - 5 p.m. . Case Management Services One of the major functions of the social work program is to assure that clients have access to adequate medical care. Our focus is to provide comprehensive client centered services which lead to empowerment and self-sufficiency. Community Health Workers/Patient Advocates provide public education, social work services and care coordination services to children and adults with sickle cell disease throughout Michigan at Children’s Hospital of Michigan and other local health institutions covering Lansing, Pontiac, Jackson, Ann Arbor, Flint, Saginaw, Kalamazoo, Benton Harbor, Grand Rapids and Muskegon. Services also include trait follow-up and conducting an annual psychosocial assessment for families with appropriate follow-up. The services provided include: ​ Client advocacy Individual and family counseling Disease education Medical referrals Trait follow up Annual psychosocial assessment and follow up Navigating insurance Assistance finding primary care and specialty physicians Assistance with basic needs Return to top of page For assistance with the above matters, please contact your nearest office below or email info@scdaami.org : Metro Detroit (313) 864-4406 Jackson/Lansing Area: (517) 394-7397 Saginaw/Flint Area: (989) 755-7752 Benton Harbor/ Kalamazoo Area: (269) 927-5629 Grand Rapids/ Muskegon Area: (616) 243-1868 Career Development The Career Development Program assists individuals with a sickle cell disease ages 14 and above to plan and achieve a career goal leading to satisfactory employment. We offer clients a six-stage career development course to aid in gainful and satisfactory employment. Other services provided include: Vocational Counseling and Testing Information about Financial Aid College Planning Resume Preparation and Interviewing Skills Assistance with Summer Employment for ages 14-21 Job Replacement and Retention Assistance Summer Reading Enrichment Program for grades K-12 Referral Services Alternative work programs Disability and accommodations assistance for school (including college) and work Resources currently utilized are Michigan Department of Labor and Economic Growth Michigan Rehabilitation Service (MRS) and the Social Security Administration’s Work Incentive program. Return to top of page For career assistance, contact Jerica McBride at 313-864-4406, ext. 109, or email her at mcbridej@scdaami.org . Community Education Our free 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. Children ages 8-17 are able to participate in activities including swimming, boating, horseback riding, crafts, archery and much more. ​ The Public Education Program is designed to increase awareness and educate the general public. Our goal is to provide meaningful and accurate information regarding all sickle cell conditions. The following services are available: Group Presentations Media Presentations Health Fair Displays Printed Material Workshops and training sessions ​ Return to top of page Keep up with our latest events . For additional information on services, email info@scdaami.org or call 313-864-4406 Testing & Genetic Counseling Community Education SCDAA-MI’s services are available throughout Michigan and span lifetime needs. ​ For more information: Call 313-864-4406 Email info@scdaami.org Contact our nearest satellite office: Jackson/Lansing Area: (517) 394-7397 Saginaw/Flint Area: (989) 755-7752 Benton Harbor/Kalamazoo Area: (269) 927-5629 Grand Rapids/Muskegon Area: (616) 243-1868 ​

  • 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

  • Black History Month 2023 | -scdaami-

    All About Maxine In the photo, standing left to right, Mrs. Marilyn Gripper, Treasurer CCC; Mrs. Shirley Dixon, Chairwoman CCC; Dr. Wanda Shurney, CEO and Medical Director SCDAAMI; Seated- Mrs. Maxine McBride. Photo was taken January 2023. W e honor Mrs. Maxine McBride for her community service and long-standing commitment to fighting sickle cell disease. In remembrance of a church member who perished from complications of sickle cell disease, Mrs. McBride is a founding member of the Cynthia Coles Circle (CCC) at Friendship Baptist Church in Detroit, and it was established in 1976. The Circle’s mission is to raise awareness about sickle cell disease, the need to improve care, and find a cure. For more than 30 years, Mrs. McBride has also served as a member of the Board of Directors for the Sickle Cell Disease Association Of America Michigan Chapter (SCDAAMI) further helping to raise funds, and elevate our mission. Mrs. McBride’s portrait will be proudly displayed at the Sickle Cell Disease Association of America Michigan Chapter office as a tribute to her dedication and faithful servic e. For more information about the Cynthia Coles Circle click here. CCC INFO Mrs. Maxine McBride

  • 2021 Sickle Cell Matters Walk | -scdaami-

    DONATE HERE!!! BECOME A SPONSOR Anchor 1 BECOME A VENDOR NOTICE! COMPLETELY VIRTUAL

  • 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! ​ Position Available: ​ We do not have no available employment positions at this time. ​ ​ ​ The Sickle Cell Disease Association of America - Michigan Chapter is an Equal Opportunity Employer. jobs/ careers

  • Client Feedback | -scdaami-

    client feedback Volunteer Photo Release Client Feedback SCDAA-MI has been helping improve the lives of individuals with sickle cell for nearly half a century. How are we doing? We'd like to hear from you to help shape our work for the next 50 years. Use the form below to tell us how we've been able to help you, what we can do better, and to share your ideas for other services. Your voice matters! Thanks for sharing your feedback!

  • Our Donors | -scdaami-

    We are deeply grateful for the generous support of our funders, sponsors and donors. SCDAA-MI is committed to continue delivering dedicated comprehensive services with passion and compassion to help people with sickle cell live their best lives possible as we enlighten the medical establishment and keep reaching for a cure. ​ Thank You Jalen Graham! SCDAAMI is thankful to Jalen Graham (Purdue Football Star, native Detroiter and Cass Technical High School Alum) as he presents proceeds of his #GetSeriousAboutSickleCell t-shirt campaign in memory of his Aunt Leslie Clemons and in honor of all Sickle Cell Warriors! ​ ​ ​ ​ ​ ​ ​ ​ ​ HRSA This Non Profit Program/Organization is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of awards totaling $244,000. With 0 % financed with non-governmental sources. The programming contents are those of the author and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government. For more information, please visit HRSA.gov. ​ ​ ALTRIA Thank you for the grant to support our mission to raise awareness about sickle cell disease. ​ our donors

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

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