Can I really trust others with my child? This weekend my husband and I were so excited go out for a long awaited date night away from our 3 kids. We were planning to send them down to grandparents Saturday morning, but our daughter woke up early Friday morning with pain in her arm. NOOOOOOO! With another date-night […]
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As a community coordinator I often get asked by individuals and/or groups who have been inspired by something they have recently learned about Sickle Cell: “What can we do to help”? This has always been such a difficult question to answer. Sometimes it is hard to connect people who care with the work you are so passionate about. Yet this […]
Read more ...Am I sick? Our first action in the Emergency Department is not just to control your pain, but to determine the source of your pain and see what treatment is needed. If you think you are SICK, with fever, cough or other symptoms, then make sure we know that. Is this normal pain? It’s hard for us to understand […]
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I had the privilege to catch up with Laelah Ndifon this month. Laelah is currently a junior at Washington State University. Laelah graduated in 2014 from John F. Kennedy Catholic High School and she was so excited to be accepted at WSU. She was really looking forward to finally being independent and exercising unlimited freedom. She was nervous, however, about […]
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Sickle Cell Disease Association of America 44th Conference I had the awesome privilege to travel to Baltimore in September to attend the 44th Annual Sickle Cell Convention sponsored by the Sickle Cell Disease Association of America. I went to the convention with the hopes to be informed and inspired to continue the work of supporting those in our community […]
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SPOTLIGHT!! Mr. Doug Woodson It was such a privilege to talk with Mr. Doug Woodson, aka Smokey, about his involvement in Sickle Cell Camp, and what continues to bring him back, year after year. Doug is a retired Seattle Firefighter, he worked for the fire department for 27 years, and now he is enjoying his time doing what […]
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When I first learned that I was going to Sickle Cell Camp with my sister. I was very nervous and scared. I was nervous because I didn’t know anybody who was going to attend the same camp except for my sister. And I didn’t know what to expect. I had mixed feelings and as the camp day approached I wasn’t […]
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Sickle Cell Free: Not FREE The road to freedom from Sickle Cell is certainly not free but I am blessed to say that it is attainable! Craig Jr. was born with Hemoglobin SC and is 13 years old. He has suffered multiple crises throughout his life. He is number 3 of 6 children. The only one born with Sickle Cell. […]
Read more ...December NEWS Articles include: Sickle Cell Walk, Camp, Craig Jr. Transplant update, 44th Sickle Cell Disease Association of America 44th Annual Convention overview. View the complete December 2016 Newsletter.
Read more ...Want to read the newsletter in its entirety? JUNE 2016 NEWS
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I had the privilege to speak with an amazing family : Jason (Dad), Tanishia (Mom), Deidre (grandma), Jason Jr. , Janique , Jasyra , and Jahreem. The Huery family lives in Tacoma, but for now they are managing 2 homes: one in Tacoma and one in Seattle. Jason Jr. is preparing to begin a bone marrow transplant at Seattle Children’s […]
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______________________________________________________________ Karim How has school been for you this year? Honestly it’s been great. I have been in a learning environment and I’ve gotten stronger using the school gym. I might get the chance to run the gym as an intern for the athletic coordinator. I have also met a lot of people and I appreciate everyone’s help for everything. […]
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Jasmine had her transplant in June of 2014. We had all of our children tested to see if any of them were a match for her. Christopher was the one who matched her perfectly, right down to the same blood type. We had at least two counseling sessions with SCCA and multiple tests to see where she was before […]
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Congratulations to our 2015 scholarship recipients: Karim and Seraj. I got the chance to check in with them about their school year. Seraj How has school been for you this year? I am excited that I will graduate from Seattle Central College by the end of the summer. I am only taking […]
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I have truly enjoyed the Educations Series sponsored by the Task Force this spring. We have really had some amazing guest speakers and I have learned so much. In June Dr Gary Walco, Director of Pain Medicine at Seattle Children’s Hospital, came and spoke with us about pain treatment. Some highlights from this session include: In the past 10 years […]
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Nikki E. Akparewa, RN, MSN/MPH is an advanced practice nurse and wellness coach who loves to use the joyful nature of laughter to help people create healing in their bodies by building awareness of self. Laughter Yoga even strengthens the immune system which not only prevents you from falling sick, but also helps to heal a variety of illnesses like hypertension, heart […]
Read more ...Living with Sickle Cell Anemia involves much more than just dealing with a horrible and painful disease, it affects you & your family’s lives on daily basis financially as well. In fact the financial part & obligations can be more stressful and painful than the disease itself, & they don’t stop just because you’re sick. I’m sure some financial guru […]
Read more ...Education Session Our mission is to continue to provide our Sickle Cell community with updated information about Sickle Cell disease and other topics that promote healthy living in body and mind. Special Thank you to Terry Anderson , PhD, who came to our March education session and talked with us about Clinical Trials. ________________________________________________________ Clinical trials are an essential part […]
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Much Thanks to the young men from the Fiji House for hosting our young adults on the UW campus this past April. I had the pleasure of meeting these young men and was so impressed with their generosity and the time they spent with us. Our time with these young men started on the 1st day of our “adult […]
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We were so excited this year to provide our adults (18andolder) the opportunity to gather and share in experience and laughter together Special thank you to: UW Fiji house, Chef Rokea, and Yoga instructor Eunice, for making this weekend so special for our adults impacted by Sickle Cell Disease. ______________________________________________________________ “We Were Family”: by Alexander McLean 2016 was the year where […]
Read more ...Dr. Bender spoke about Hydroxyurea. Hydroxyurea is a drug used for more than 20 years to reduce the likely hood of Sickle Cell pain crisis. Hydroxyurea is recommended by Dr. Bender and the Metropolitan Sickle Cell Task Force. Dr. Bender talked about the mechanism of action of Hydroxyurea which is the ability to increase fetal hemoglobin. A 2006 study by […]
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Each year the University of Washington Fiji Fraternity puts on a fundraiser known as Major Project. This year we chose to partner with Metropolitan Seattle Sickle Cell Task Force as our beneficiary. One of the freshman’s mom works for the organization and informed us of their camp in August. We felt that this would be a great opportunity for us […]
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Teens Writing from the Heart of Illness & Healing is an week workshop for teens living with chronic health or mental health issues. It is being held at Odessa Brown Children’s Clinic in the central area and is open to teens aged 12 to 18 years. It is free.
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April Farrell Hasty was visiting Seattle for a conference from her home in Tampa, FL, and took time to drop by one of the Seattle Task Force meetings. April has Sickle Cell Anemia. She was diagnosed at two years old and is 51 years young now.
Read more ...What happens when your child becomes an adult? Your teen will leave home eventually and you want them to be well prepared. In this article read about what makes this transition difficult, going away to college, and tips for parents.
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We sadly say goodbye to a valuable friend and partner Dr. Bill Hobbs. Dr. Hobbs is very grateful for the relationships that he has formed over the years while fulfilling his roles at the Puget Sound Blood Center, University of Washington, and at the Seattle Cancer Care Alliance.
The Metropolitan Seattle Sickle Cell Task Force (MSSCTF) was incorporated as a 501(c)(3) organization in 1994. The MSSCTF was the brainchild of Gertrude Dawson, Elizabeth Thomas, and others who had a vision about getting help for an underserved population of people with terrible health issues—people with Sickle Cell Disease.
Read more ...Metropolitan Seattle Sickle Cell Task Force provides an annual camp (we just celebrated its 21st year) for local kids with Sickle Cell Disease at no charge to their families. To view photos, click on photo link or caption link. Published in September 2013 newsletter
Read more ...Many people go through everyday aches and pains. Some people suffer because of old sports injuries, some from various accidents, and others because of disease. Most people rely on prescription pain relievers given to them by a doctor and don’t really consider some of the long-term effects. We in the Sickle Cell community depend on these medications and need to be informed about what we use.
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Camp Korey is a nonprofit organization, which provides camping programs to children living with chronic or life-threatening medical conditions free of charge. They are located in Carnation, Washington…