You searched for world sickle cell day - Page 2 of 5

BLOG

Sickle Cell Warriors in Cameroon Still Face Dangerous Prejudices and Labeling
May 28, 2018 by Andrea
Photo for illustrative purposes only

We talk about the stigmatization of sickle cell here in the U.S., especially when it comes to doctors using biased language in their patient notes, which can affect the quality of a person's healthcare long-term. But in some countries, such as Cameroon, such stigma can lead to death.

As reported by Reuters, many people in Cameroon still hold the belief that children with sickle cell are actually witches or sorcerers who's mission is to destroy the families they were born into. Some are abandoned by their parents, some are purposefully neglected, and, in extreme cases, some are killed. One woman interviewed for the Reuters article describes suffocating her 5-year-old son last year because she was told his illness was mystical and would ruin her life. "I killed my child because he was going to die anyway," she told the news service. "Before, he was suffering greatly. Now, he is at peace."

This isn't a new development for the country, but since this belief still persists, a lot more must be done to raise awareness and educate communities there, especially since Cameroon has a population of about 400,000 sickle cell warriors. In past years, Cameroon health officials have encouraged genotype testing before marriage and offered some free or reduced treatment costs. However, those living there with SCD now feel that to truly have a chance at ending this disease, genotype tests should be free -- and mandatory.

You, too, can help sickle cell warriors living in Cameroon. Perhaps, in honor of the upcoming World Sickle Cell Day, you can donate to help equip a sickle cell lab in Cameroon via GlobalGiving.

Read the full article here.

Category: Chronic Health Conditions in Children, Sickle Cell Disease Tags: Cameroon, sickle cell | Comments Off on Sickle Cell Warriors in Cameroon Still Face Dangerous Prejudices and Labeling
How Sickle Cell Inspired This Writer’s Debut Novel
April 16, 2018 by Andrea
Author Photo by Eniola Alakija

A rare disease in the U.S., sickle cell affects about 100,000 total people. In Nigeria, however, the occurrence of SCD isn't as uncommon; in fact, more than 40 million Nigerians carry sickle cell trait and more than 150,000 babies are born with sickle cell disease each year, making Nigeria home to the largest number of sickle cell warriors in the world.

One of those 40 million, Ayobami Adebayo, is the 30-year-old author of the acclaimed novel "Stay With Me," of which the writing was heavily influenced by her own carrier status and the state of SCD in her home country. A candidate to receive the Bailey's Prize for Women's Fiction, the 9mobile Prize for Literature, and the Wellcome Book Prize (for fiction or nonfiction works that deal with themes of medicine, health, and illness), among others, Adebayo's "Stay With Me" tackles just how much sickle cell disease can affect the families involved.

In a recent interview with The Guardian, Adebayo says the loss of two of her own friends as teens to sickle cell also inspired her debut work. "I just couldn't stop thinking about what it meant for the mother," she told the paper. "Not just to experience that kind of loss, but to somehow get up the next day."

Read the full interview here, and if you're interested in reading the novel, you can pick up a copy here.

Category: Sickle Cell Disease Tags: Ayòbámi Adébáyò, sickle cell, Stay With Me | Comments Off on How Sickle Cell Inspired This Writer’s Debut Novel
How Sickle Cell Gene Mutation was Recently Traced to One Shared Ancestor
March 13, 2018 by Andrea

We've known for decades that sickle cell disease stems from a gene mutation that helped protect people from contracting malaria. And now, as of last Thursday (March 8), when this study was published in the American Journal of Human Genetics, we've learned that every single person who has ever lived with sickle cell disease or sickle cell trait is descended from one Saharan child born 7,300 years ago.

As the New York Times reports, this mutation was only advantageous -- that is, until that child's descendants began to settle in different parts of the African continent, and generations later, unknowingly, met and started families with other descendants of Child Zero, sometimes passing down two copies of the mutation, ultimately creating what we know as sickle cell disease. Sickle cell currently affects about 100,000 people in the U.S. and about 300,000 worldwide.

"Dr. Shriner and Dr. Rotini [leaders of this recent study] analyze the genomes of nearly 3,000 people to reconstruct the genetic history of the disease," the New York Times reports. The hope is that this new discovery will lead to better patient care and better overall understanding of sickle cell itself.

Read the original article in its entirety here.

(*Photo by Ed Uthman [CC BY 2.0] via Wikimedia Commons)

Category: Research, Sickle Cell Disease Tags: sickle cell, sickle cell mutation | Comments Off on How Sickle Cell Gene Mutation was Recently Traced to One Shared Ancestor
Rare Disease Day is Here. Find an Event Near You.
February 28, 2018 by Andrea

The most common of the rare diseases, sickle cell affects about 100,000 Americans. Even so, there's still a lot to be done on the research front to fully understand it, how to treat it more effectively, and potentially, how to find a cure. Your participation in Rare Disease Day can help with all of these things.

Today, February 28, 2018, 80 countries will unite to recognize Rare Disease Day for the 11th year in a row, with hundreds of events taking place across the world. This year's theme is research, and the plan is to get as many patients, families, friends, and other allies as possible to actively "call on policy makers, researchers, companies, and healthcare professionals to increasingly and more effectively involve patients in rare disease research."

Take a look at the events below to find one near you. (Can't attend in person? Show your support on social media using these ideas.)

1) Running on Air's Third Annual Rare Disease Day Virtual Race
2) Harmony 4 Hope's Rock Rare Disease: A Global Online Music Campaign
3) Georgia Rare Disease Day Seminar/Meet-and-Greet with Legislators
4) Broad Institute's Third Annual Beyond the Diagnosis Art Exhibit
5) Eight Annual Sanford Rare Disease Symposium
6) Rare Disease Week on Capitol Hill
7) Swing Fore the Kids Rare Disease Awareness Event

For a full list of events happening all over the globe, click here.

Category: Chronic Health Conditions in Children and Adults, Sickle Cell Disease Tags: rare disease day, research, sickle cell | Comments Off on Rare Disease Day is Here. Find an Event Near You.
T-Boz Releases New Memoir Just in Time for Sickle Cell Awareness Month
September 19, 2017 by Andrea

"A Sick Life: TLC 'n Me: Stories from On and Off the Stage", the new memoir from Tionne "T-Boz" Watkins, was released on September 12 -- appropriately, right in the heart of Sickle Cell Awareness Month. More than a year in the making, this book details T-Boz's experiences of coping with sickle cell, while simultaneously making a living as a member of the highest-selling girl group.

In an exclusive interview with Good Morning America's Robin Roberts, T-Boz revealed the significance of her memoir's title. "It's a strong word, 'a sick life,' 'cause I've had it all," she said. "I was told I would never live past 30; I would be disabled my whole life and never have kids." Obviously, she beat every odd stacked against her and then some: She's now 47 years old, she birthed a child at age 30, and she managed a hectic schedule and traveled the world as a member of TLC. Surmounting those obstacles didn't come without setbacks, however.

According to People magazine, which landed the rights to publish excerpts of the memoir in their latest issue, T-Boz told them that after giving birth to her daughter Chase, her body began to shut down and she was in a coma for three days. “Often, it’s hard to breathe or walk,” the magazine reports T-Boz wrote in her memoir. “Some days I wake up consumed by pain. It’s like knives stabbing me over and over again in my joints. Chase gave me a reason to keep pushing through.”

"A Sick Life" is on sale now, and you can even get a signed copy of the book by clicking here.

Category: Chronic Health Conditions in Children and Adults, Sickle Cell Disease Tags: A Sick Life memoir, sickle cell awareness month, T-Boz, TLC | Comments Off on T-Boz Releases New Memoir Just in Time for Sickle Cell Awareness Month
Sickle Cell Warrior and Member of Mobb Deep, Prodigy Passes Away at 42
June 27, 2017 by Andrea
Photo: Instagram/@prodigymobbdeep

Last Tuesday (June 20), eerily enough just one day after World Sickle Cell Day, Prodigy of the famous hip-hop duo Mobb Deep made his transition. Only 42 years old, the rapper was on tour in Las Vegas where he died from complications of sickle cell disease -- a condition he was always very open about.

In fact, in his 2011 memoir, My Infamous Life, Prodigy detailed his struggles with the disease, at one point discussing a close call he had while on tour in India. "Ten hours into the eighteen-hour flight, my sickle cell pain crept up. By the time we landed in Bombay, I was in bad shape," he begins. "Slowly I felt the sickle cells accumulating and spreading throughout my body. Then I felt something I never felt before -- the sickle cells moving to my heart. It was time to put in an emergency call to the Most High."

His memoir wasn't the only place Prodigy used to relay his battle with SCD. He also communicated what he was going through and how he was coping through his lyrics and via interviews. Here are a few things he had to say on living life and overcoming hardships:

"Until my death, my goal's to stay alive. Survival of the fit, only the strong survive." -Survival of the Fittest, Mobb Deep

"My life before hip-hop was just pain. Sickle cell was my life before hip-hop. I ain't really have no life -- that was it. I'm growing up, that's all I know, just being in a ... hospital all the time. And then music ... The aggressiveness of it attracted me to hip-hop because I was angry inside. I was an angry kid because of sickle cell ... [hip-hop] helped me get my aggression out." - interview with NPR, 2013

"I was born with pain. My moms and my pops passed it down to me ... I'm talkin' 'bout permanent, physical suffering. You know nothin' about that, you just complain 'cause you stressed. My pain's in the flesh, and through the years that pain became my friend; sedated with morphine as a little kid. I built a tolerance for drugs ... Now hospital emergency treat me like a fiend ... Beggin' God for help ... Naw, you can never feel my pain." - You Can Never Feel My Pain, Prodigy

"I love to promote good health and certain things that you're supposed to be doin' with your diet because I want other people with sickle cell to learn how I live ... Hopefully, I can inspire other people with sickle cell to get their stuff together and get out there and do what they gotta do. Don't let it hold you back." - DJ Booth interview, 2008

Have a favorite lyric or quote from Prodigy/Mobb Deep that's not listed here? Share it in the comments below.

Category: Sickle Cell Disease Tags: Mobb Deep, Prodigy, sickle cell | Comments Off on Sickle Cell Warrior and Member of Mobb Deep, Prodigy Passes Away at 42
11 Movies and TV Shows to Bingewatch on Those Sick Days
June 6, 2017 by Andrea
You stay on top of managing your sickle cell -- you're always hydrated, you avoid extreme temperatures, you take your supplements, and you maintain an healthy diet. Sometimes, though, triggers like stress creep in and send you into a crisis. As you recover, it's important relax, so to help you settle in to full-on rest mode, we're bringing you a list of the best feel-good movies and TV shows to bingewatch on those sick days:

1. Unbreakable Kimmy Schmidt
"A woman who is rescued from a doomsday cult starts life over as a nanny for an Upper East Side socialite in New York City. Armed with just a backpack, light-up sneakers and a couple way-past-due library books, she takes on a world she didn't think even existed anymore."

2. Masterminds
"Along with a group of half-brained criminals led by Steve Chambers and an absurdly faulted heist plan, David manages the impossible and makes off with $17 million in cash…only problem is he foolishly hands the money over to this wild group of double crossers and has been set up to take the fall."

3. Queen of Katwe
"Queen of Katwe is the colorful true story of a young girl selling corn on the streets of rural Uganda whose world rapidly changes when she is introduced to the game of chess, and, as a result of the support she receives from her family and community, is instilled with the confidence and determination she needs to pursue her dream of becoming an international chess champion."

4. The Mindy Project
This show "follows a skilled OB/GYN navigating the tricky waters of both her personal and professional life, as she pursues her dreams of becoming the perfect woman, finding the perfect man and getting her perfect romantic comedy ending." - Hulu

5. The Secret Life of Pets
"The quiet life of a terrier named Max is upended when his owner takes in Duke, a stray whom Max instantly dislikes." -IMDB

6. Superstore
"From the bright-eyed newbies and the seen-it-all veterans to the clueless summer hires and the in-it-for-life managers, together they hilariously tackle the day-to-day grind of rabid bargain hunters, riot-causing sales and nap-worthy training sessions."

7. Zootopia
"Comprised of habitat neighborhoods like ritzy Sahara Square and frigid Tundratown, it’s a melting pot where animals from every environment live together—a place where no matter what you are, from the biggest elephant to the smallest shrew, you can be anything."

8. This Is Us
"A smart, modern new dramedy that will challenge your everyday presumptions about the people you think you know." -Hulu

9. Hidden Figures
"The incredible untold story of Katherine G. Johnson, Dorothy Vaughan and Mary Jackson—brilliant African-American women working at NASA, who served as the brains behind one of the greatest operations in history: the launch of astronaut John Glenn into orbit, a stunning achievement that restored the nation’s confidence, turned around the Space Race, and galvanized the world. The visionary trio crossed all gender and race lines to inspire generations to dream big."

10. New Girl
"An ensemble comedy centering on a free-spirited young woman, her three male roommates and her best friend, as they navigate modern relationships and end up forming a charmingly dysfunctional – or strangely functional – family." -Hulu

11. Black-ish
"Anthony Anderson stars as a father who begins to worry maybe his family have assimilated a little too much into their suburban lifestyle."

Have any to add to this list? Leave your suggestions in the comments below!

Category: Self-Care Comments Off on 11 Movies and TV Shows to Bingewatch on Those Sick Days
Sickle Cell and Menstruation: How to Raise Awareness and Advocate for Better Care
May 26, 2017 by Andrea
Photo: pxhidalgo/istockphoto.com

Monthly periods can be painful enough for women and girls with completely normal red blood cells and hemoglobin levels. Throw sickle cell in the mix and typical cramps can become a full-blown crisis -- every single time. Research shows that menstruation can directly trigger a pain crisis in sickle cell warriors, and also confirms that this particular area of study is neglected. Much more exploration needs to be done in order to better care for female patients with SCD.

A common issue when it comes to the realm of period talk in general is that it's forsaken, perpetuating an idea that periods are taboo and "dirty" and "bad." This negatively affects women overall, fueling lack of understanding, causing women and girls in some countries to have to stay home from school and work, and even here in the United States, it has resulted in a serious deficiency of research, and in turn care, for sickle cell warriors on their periods.

To combat the stigma of this completely natural bodily process, WASH United created Menstrual Hygiene Day -- a global initiative to raise "awareness of the challenges women and girls worldwide face due to their menstruation and highlights solutions that address these challenges." First celebrated in 2014, MH Day occurs every year on May 28 (May is the fifth month and periods usually last five days, and a full cycle is typically 28 days). This provides the perfect opportunity for the sickle cell community to voice concerns and difficulties that are unique to them when it comes to that time of the month. Here's how to get involved:

1) Download the MH Day 2017 campaign materials here.
You'll find educational posters, fact sheets, emojis, and more -- in several languages!

2) Share your story on social media.
Not a sickle cell warrior? Help spread awareness through the stories of others like this one. Be sure to include the hashtag #sicklecell with the hashtags #menstruationmatters, #mhday2017, and/or #menstravaganza in your posts.

3) Host a seminar, local art exhibit, or other program to help educate the community specifically about how menstruation can affect sickle cell warriors.

Category: Sickle Cell Disease, Sickle Cell Education Tags: menstrual hygiene day, sickle cell, sickle cell and your period | Comments Off on Sickle Cell and Menstruation: How to Raise Awareness and Advocate for Better Care
How to Turn the March for Science’s Actions into Sickle Cell Activism
April 24, 2017 by Andrea
Poster design: marchforscience.com

The March for Science -- which saw protesters all over the world stand up against the Trump administration's "alternative facts"-driven outlook on the discipline -- took place on Earth Day (Saturday, April 22, 2017). And while the majority of the march's focus seemed to center on climate change, the Flint water crisis, and wildlife protection, scientific research of all kinds is championed by the marchers, supporters, and activists.

That includes research and advancements for sickle cell disease.

This new week post-march is one of continued action and provides the perfect opportunity to further awareness of SCD, starting with today (Monday, April 24), in which the theme is "Science Discovers." The march's website provides various ideas on how to participate in this first day of action: promote science outreach, plan a science game night, and get others involved. Building upon the March for Science's suggestions, we've got a few thoughts on how you can tailor your first day of action -- and the rest of the week's -- to be sickle cell-specific:

1. Plan an informal teach-in (or series of teach-ins) at a local school, church, or community organization to be held in the near future. Partner with a nearby chapter of the SCDAA or other similar group to bring in experts and speakers.

2. Suggest that your book club choose a sickle cell-themed book for your next selection, and come to the meeting ready to discuss what you've all learned, and brainstorm ways you can support the community.

3. Create your own SCD-themed card game or board game with family and friends. Then, host a game night to actually play your newest masterpiece. It's a fun way to educate yourself and others you know about sickle cell. Check out this list of science-related games for inspiration on developing your own.

As you work on those ideas and begin the planning process, keep the other days of action in mind, too, and implement more activities and programs so that your year is full of activism and awareness.

Category: Resources for Parents, Sickle Cell Education Tags: SCD, sickle cell, the march for science | Comments Off on How to Turn the March for Science’s Actions into Sickle Cell Activism
How One Sickle Cell Warrior Turned Her Health Status Into a Thriving Business
February 27, 2017 by Andrea
Photo: Instagram/thewarriorstoryng (Sickle cell warrior, Toyosi Ogunemeka)

Nigeria has the largest population of sickle cell warriors in the whole world. In fact, more than 150,000 babies are born with sickle cell each year. One of those adult warriors is working to increase awareness of SCD in her native country through her start-up, Toyo Medical Techs, which supplies health-related products that help treat, diagnose, and evaluate conditions like sickle cell disease.

In an interview with She Leads Africa, Toyo Medical Tech's founder, Toyosi Ogunemeka, discussed her journey toward entrepreneurship, the toll it sometimes takes on her, and how she pushes through. "Every business, especially at the start-up stage is very stressful and challenging. In my business, I have to do a lot of running around and drive long distances," she told SLA. "There are days I feel overwhelmed and break down; there are also days I get comments like, 'I love what you do; keep it up' and that just makes my day."

Armed with a graduate degree in biomedical engineering and inspired by her own regular hospital stays, Toyosi was motivated to improve the conditions she, herself, had experienced in the health care system of her home country. Her goal? To bolster Nigeria's healthcare technology, and get it on par with that of foreign countries, which already have such tech in place.

Besides running her main business, Toyosi also manages a sickle cell awareness profile on Instagram, called The Warrior Story NG. Described as a nonprofit e-community, Toyosi's Instagram profile features a weekly series called, #AskTheDoctorFriday, in which the guest doctor of the day discusses a certain medical issue and answers followers' questions in the comments section of the post. Other posts include conversations about medicines, support groups, and research advancements, just to name a few.

Read the original article here for even more insight into the strength and drive of this warrior-business leader.

Category: Sickle Cell Disease, Sickle Cell Education Tags: She Leads Africa, sickle cell disease, Toyo Medical Techs, Toyosi Ogunemeka | Comments Off on How One Sickle Cell Warrior Turned Her Health Status Into a Thriving Business