Respect just for being alive fam.
Sickle Cell Awareness Thread: Sickle Cell Awareness Month 2023! UPDATE: FDA APPROVES GENE THERAPY
- Thread starter playahaitian
- Start date
Respect just for being alive fam.
World Sickle Cell Day 2022 Virtual Kids Create : Get well soon card | Brooklyn Public Library
Learn how to make a get well soon card by following instructions on our facebook page. Visit: https://www.facebook.com/jamaicabaybpl/ Website : https://www.sicklecelldisease.org/ Booklist : https://www.bklynlibrary.org/search?booklist=574788www.bklynlibrary.org
Finally got my shit together enough to do an online fundraiser.
Can you send me a link to a reputable charity that either supports research for a cure or provides treatment and support to those who suffer?
I'll PM you family
A Year In, 1st Patient To Get Gene Editing For Sickle Cell Disease Is Thriving
Since receiving a landmark treatment with the gene-editing tool CRISPR, a sickle cell patient has the strength to care for herself and her children — while navigating the pandemic.
www.npr.org
What is Sickle Cell | Causes & Prevalence
Sickle cell is a genetic disorder that affects red blood cells. Learn more about what causes this unpredictable, progressive and life-threatening condition.
World Sickle Cell Day - Sickle Cell Disease Association of America Inc.
June 19 was officially designated as World Sickle Cell Awareness Day. The international awareness day is observed annually with the goal to increase public knowledge and an understanding of sickle cell disease, and the challenges experienced by patients and their families and caregivers. Shine...
www.sicklecelldisease.org
Letter to the editor: Join us June 19 to ‘Shine the Light’ on Sickle Cell Disease
Dear Editor, Our community-based organization, Tapestry Connections, is celebrating World Sickle Cell Awareness Day on June 19, 2022. The theme is “Shine the Light on Sickle Cell Disease.” The United Nations established World Sickle Cell Awareness Day in 2008.
coastalcourier.com
Dear Editor,
Our community-based organization, Tapestry Connections, is celebrating World Sickle Cell Awareness Day on June 19, 2022. The theme is “Shine the Light on Sickle Cell Disease.” The United Nations established World Sickle Cell Awareness Day in 2008.
Our desired goal is to increase awareness, build support networks, raise critical resources, and strengthen our collective resolve to advocate for access to sickle cell services and a cure for sickle cell disease.
Sickle cell disease (SCD) is one of the world’s most prominent leading genetic diseases that has severe physical, psychological and social consequences for those affected and their families. In its most homozygote form, it is one of the most lethal genetic diseases, affecting 90,000 to 100,000 Americans. As such, SCD is a significant public health concern. Studies show that the annual cost of medical care in the US for people who suffer from SCD exceeds $1.1 billion. The sickle cell warriors would like the community to use red lights in their windows/ porches/vestibules on June 19.
On behalf of the Sickle Cell Community, we greatly appreciate your help in shining a light on this disease and thereby helping to enhance the quality of life for families and individuals affected with SCD.
Thank you in advance for your support of the sickle cell community.
Sincerely,
Deloris Mitchell, PhD Executive director, Tapestry Connections, Inc.
Van Hollen, Booker Introduce Resolution Supporting World Sickle Cell Awareness Day | U.S. Senator Chris Van Hollen of Maryland
The Official U.S. Senate website of Senator Chris Van Hollen of Maryland
www.vanhollen.senate.gov
VAN HOLLEN, BOOKER INTRODUCE RESOLUTION SUPPORTING WORLD SICKLE CELL AWARENESS DAY
U.S. Senator Chris Van Hollen (D-Md.) joined Senator Cory Booker (D-N.J.) in introducing a resolution expressing support for the designation of June 19, 2022 as “World Sickle Cell Awareness Day” to increase public awareness about sickle cell disease and the continued need for research, early detection, and effective treatments that lead to a cure. The resolution was also cosponsored by Senators Sherrod Brown (D-Ohio) and Alex Padilla (D-Calif.). Companion legislation was introduced in the House by Representatives Danny Davis (D-Ill.-07th), Michael Burgess (R-Texas-26th), Burgess Owens (R-Utah-4th), G.K. Butterfield (D-N.C.-1st), and Barbara Lee (D-Calif.-13th).
Sickle cell disease (SCD) is a rare, inherited disorder that causes a person’s red blood cells to become deformed and get stuck in their veins, blocking oxygen flow throughout the body. In the United States, 100,000 people are affected by SCD, including 1 in every 365 African-American births, and 1 in every 16,300 Hispanic-American births. Around the world, sickle cell disease affects millions of people, particularly in certain areas of sub-Saharan African, eastern Saudi Arabia, and central India. In countries with fewer resources, more than 90 percent of children diagnosed with sickle cell disease do not live to see adulthood. Despite being the most common inherited blood disorder in our country, research, treatment, and awareness efforts for the disease still lag far behind other chronic illnesses.
“Sickle cell disease impacts millions of people every year, and yet for too long it hasn’t received the resources necessary to fight it. Raising awareness about this disease – and increasing funding to better understand, detect, and treat it – has got to be a priority. For me, this issue hits close to home, as my office recently lost a beloved member of our team to sickle cell disease. I will continue working to honor his memory – and the memory of all of those lost to this disease – with action,” said Sen. Van Hollen.
“Sickle cell disease continues to be a global health concern affecting millions of people,” said Sen. Booker. “In the United States and worldwide, the disease disproportionately impacts Black people, and over 90 percent of children with the disease in regions with poor health care infrastructure and a lack of medical resources do not reach adulthood. This resolution calls on the United States to lead in developing new and innovative therapeutic approaches as well as global initiatives to support people living with sickle cell disease.”
“Sickle Cell Disease is not a partisan issue but rather, one that is nonpartisan. From working across the aisle to working alongside my colleagues in the Senate, it is a policy area that desperately needs addressing”, said Congressman Danny Davis. “Senator Booker has remains a champion for patients living with Sickle Cell and their families to help bring better treatment options including a cure for this rare disease.”
“Sickle cell disease can lead to many medical complications – but even though millions of people around the world are affected by this disease, research, detection and treatment are too far behind,” said Sen. Brown. “As a nation, we must commit ourselves to gaining a better understanding of sickle cell disease through research, and must also develop a better treatment strategy for patients around the globe.”
“Sickle cell disease impacts nearly 100,000 Americans, many of them young children of color who require frequent, high-quality medical care,” said Sen. Padilla. “We must strengthen our health care system and increase medical resources for Americans impacted by this disease. I’m supporting this resolution to reaffirm our commitment to making the United States a leader in developing more efficient practices for researching and treating sickle cell disease.”
World Sickle Cell Day
Alexander Boucher with the University of Minnesota Medical School, M Health Fairview, is available to comment on sickle cell disease and the impact that it has on our communities.
Alexander A. Boucher, M.D., FAAP
“Sickle cell disease (SCD) is an inherited blood disorder that affects several hundred Minnesotans, one hundred thousand Americans and millions worldwide. It can lead to progressive problems in all organs — most often pain, pneumonia and kidney disease — which can lead to early death. In the United States, most individuals with SCD are Black and face barriers to care due to structural racism and other social determinants of health. At the University of Minnesota, we are engaged in cutting-edge bench-to-bedside research, including working to cure SCD. We are simultaneously working with multidisciplinary medical teams to provide a more equitable, transparent and holistic approach to care across our system.”
DOH Leon Marks World Sickle Cell Day | Florida Department of Health in Leon
Sickle Cell Disease (SCD) is the most common genetic disease worldwide and is estimated to affect 8,000 people in Florida and some 100,000 people nationwide. The Florida Department of Health in Leon County (DOH Leon) recognizes June 19 as World Sickle Cell Day and encourages citizens to...
DOH Leon Marks World Sickle Cell Day
June 15, 2022
DOH Leon Recognizes World Sickle Cell Day
Tallahassee, Fla. – Sickle Cell Disease (SCD) is the most common genetic disease worldwide and is estimated to affect 8,000 people in Florida and some 100,000 people nationwide. The Florida Department of Health in Leon County (DOH Leon) recognizes June 19 as World Sickle Cell Day and encourages citizens to consider blood donation to support those living with SCD.
Every baby born in a hospital in the United States is tested for SCD. SCD is most common among African Americans. It can cause severe episodes of pain, anemia requiring blood transfusions, and frequent hospitalizations due to effects on other organs. Though there is no cure, treatments and support services are available for those in Leon County living with SCD.
“A significant way to support those with Sickle Cell Disease in Leon County is to donate blood,” said Sandon Speedling, MHS, CPM, CPH, DOH Leon Interim Health Officer. “Those with SCD must receive frequent blood transfusions. Having a diverse supply of blood types is crucial for these patients.”
DOH Leon will join the Sickle Cell Disease Foundation of Tallahassee and other partners for a community health fair to mark World Sickle Cell Disease Day:
Community Health Fair
Saturday | June 18, 2022
10:00 a.m. to 3:00 p.m.
2625 South Adams Street
Tallahassee, FL 32301
(Free food giveaways, games, prizes, free health screenings for the sickle cell trait, on-site health vendors, health education brochures)
Wow my son just completed this gene therapy a couple of months ago through St Jude. He is doing fine. So glad to see they are making headway to a cure.A Year In, 1st Patient To Get Gene Editing For Sickle Cell Disease Is Thriving
Since receiving a landmark treatment with the gene-editing tool CRISPR, a sickle cell patient has the strength to care for herself and her children — while navigating the pandemic.
Both of my sons are on it have been on it for about 15 yrs.
I tuned in briefly to check out the mixcloud show. Respect.
*If you can, eliminate that electrical hum that played during the set.
Don't suffer from or know anyone that does. I feel you brothas and sistas suffering .hold on be strong
Man I could barely look at the video from looking at old girl lips and mouth. Nice teeth, lips and smile goes a long way with me. On the other hand a yukmouth woman can get the finger. The middle. Warm it up Kris!
Son has been on it for most of his life. It has been the game changer IMO we used to freak out whenever he got a fever but honestly he has only had 2 mild pain crises
If you have doubts about it or questions let me know but honestly its one of the better treatments out there. The research/therapy is getting better however but hydroxurea has worked well for my son other people have varying results but we are very strict about the dosage he gets on a daily basis
I want to try it but I ain't want to give blood again. How's his strength. Is he very active and does he tire easily?
Highly active (Only 6 though) just started soccer camp and everything. We make sure he is religiously drinking water everyday as well. So that helps as well. Results do vary when it comes to Sickle Cell Crises in terms of frequency from person to person, but as other mention in this thread, taking care of yourself diet-wise and water-wise goes a long way.
Other oral meds I believe are FDA approved right now. It is worth reaching out your Hematologist to see if there are other options
Plan to do that, gonna hit my doctor up and see what he says. I think I need it since I'm always tired but then again by BMI is around 25-30% so I need to slim down but when I excerise my back flares up which leads to a painful crisis.
Praying for you fam during your journey. I am hopeful that the science/research/treatments are getting better
hang in there man.
...did anybody else discover that they were carrying SC during basic training?
i remember looking at my dog tags and seeing the words 'sickle cell'
my first though was 'what the fuck is this?'
then i figured it must be the trait and no big deal, since nobody ever addressed it with me.
Bro I should have given you more support i got flooded there for a minute.
So far the bgol family has given you solid advice
Imma hit you
i was 27 at the time, i am 52 now. but yeah , that scared the living shit outta me.
Just to follow up also. My cousin is dealing with bullshit hematologists in Florida that don't know jack shit about sickle cell. Be careful of the old white male hematologists in Florida, they try to help but they are more versed in other blood disorders
^^^^
I got so many stories unfortunately I can't break confidence to share about this topic
So is it that she has the disease or she has the trait that if she has a baby with someone else that has the trait the baby will have the disease?
She has an aggressive form of the disease.