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This Choir’s Cover of “Rise Up” Encourages People to Donate Blood for Sickle Cell Warriors
December 12, 2017 by Andrea
Photo: Twitter

The English-Welsh health organization, NHS Blood and Transplant (NHSBT), has partnered with the British music awards show, MOBO, for the second year in a row to push for an increase in blood donations. Understanding that diversity in the blood supply is extremely important, especially since sickle cell disproportionately affects people of African descent, NHSBT and MOBO have created a new addition to this year's partnership: the B Positive Choir.

A 60-member singing group composed of sickle cell warriors, caregivers, friends, and family from all over England, the B Positive Choir most recently performed at the MOBO Awards show, which re-aired last night (Monday, Dec. 11) on BET International. Today, the choir also released their very first single -- a cover of Andra Day's "Rise Up" -- to motivate people to "'Rise Up' and be counted as blood donors."

Currently, the NHSBT states on their website that they are in need of 200,000 new blood donors -- 40,000 of whom need to be Black, so the closest blood match can be given to Black warriors who desperately need it.

If you live in the UK, you can register to give blood here. In the U.S., visit redcrossblood.org to find a blood drive near you.

In the meantime, be sure to check out the B Positive Choir's MOBO awards show performance below:

Category: Red blood Cell Health, Sickle Cell Disease Tags: B Positive Choir, blood donation, MOBO Awards, NHSBT, Rise Up, sickle cell disease | Comments Off on This Choir’s Cover of “Rise Up” Encourages People to Donate Blood for Sickle Cell Warriors
How 17-Year-Old Panteha Abareshi Turned Sickle Cell Pain Into Her Artistic Muse
April 5, 2017 by Andrea
YouTube/Screenshot

Artists find inspiration in various things and places -- love, nature, beauty, and personal experiences, just to name a few. Seventeen-year-old Panteha Abareshi draws on the latter; more specifically, she channels her sickle cell pain into her art.

Diagnosed with sickle cell disease -- sickle cell beta-zero thalassemia to be exact -- at two years old, Panteha understands what it's like to live with acute, chronic pain and have an intense need to escape that pain, even just a little bit, however possible. When her health took a turn for the worse in the fall of 2014, Panteha found herself in the hospital regularly. She was in so much pain that she could only move her hands and her arms. In the new short film, The Girl Who Loves Roses, by The FRONT, Panteha tells of how in that moment, she asked her dad to hand her a sketchpad. She began drawing images of women of color expressing pain, struggle, and overall femininity. "I would create alternate realities that I could take myself to to explain why I was in the hospital or to make it somewhere I wanted to be, rather than somewhere I had to be," she shares in the film.

Besides a way to cope with her physical and mental pain, Panteha also uses her illustrations as a way to increase the representation of women of color in the art world, especially when it comes to women of color with mental illness and chronic illness, both of which Panteha struggles with. On March 30, her artwork, along with the short film, went on display at Larrie, an art gallery in NYC's Chinatown, and according to Paper magazine, the show will be around for two weeks, as part of pop-up art show highlighting Panteha's works.

Check out the short, behind-the-scenes film below and continue scrolling to see a few samples of the art she has created.

Delicately Please!!

A post shared by Panteha Abareshi (@pantehart) on Feb 16, 2017 at 1:48pm PST

Let Your Emotions Show

A post shared by Panteha Abareshi (@pantehart) on Feb 13, 2017 at 5:51am PST

Self-portrait to break my own heart

A post shared by Panteha Abareshi (@pantehart) on Aug 16, 2016 at 11:53am PDT

Category: Sickle Cell Disease Tags: Panteha Abareshi, sickle cell, sickle cell disease, sickle cell pain, The Girl Who Loves Roses | Comments Off on How 17-Year-Old Panteha Abareshi Turned Sickle Cell Pain Into Her Artistic Muse
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
New Video Game Aims to Infuse Fun with Sickle Cell Awareness
January 16, 2017 by Andrea
Photo: Play for Change

At Chicago's DePaul University, there's a team of video game designers seeking to tackle more than the typical platform game. Led by Doris Carmen Rusch (founder and creative director of Play for Change), this crew - which is comprised of undergrads, grad students, and alumni -- has been developing a game called "Blood Myth" for the specific purpose of increasing sickle cell awareness.

Reminiscent of "Dungeons & Dragons" with its folklore aspect, "Blood Myth" is being built in partnership with DePaul's athletic department. The game takes players into an imaginary world in which they must surmount obstacles on their quest toward the top of a magical mountain to discover the Blood Myth's truths.

"'Blood Myth' aims to create empathy for people with sickle cell disease and remind people with sickle cell that however they may feel, they are not 'cursed," the game's website explains. "Play 4 Change aims to use 'Blood Myth' to increase adherence to crisis-prevention methods, self-care, and promotion of a life-affirming, hopeful perspective to those with sickle cell."

Just yesterday (Jan. 8), Play for Change hosted a playtest for the new game, and according to recent Twitter updates, players enjoyed the storyline and the gameplay.

For more updates on the game and when it will be released, follow Doris Carmen Rusch on Twitter and follow Play for Change on Facebook.

Category: Chronic Health Conditions in Children and Adults, Resources for Parents Tags: Blood Myth, DePaul University, Play for Change, sickle cell disease, sickle cell game | Comments Off on New Video Game Aims to Infuse Fun with Sickle Cell Awareness
Mortality Rates in Pregnant Women with Sickle Cell Slashed
January 2, 2017 by Andrea

Happy New Year! We're only two days in to 2017, and already, there's been an amazing new advancement in the care of patients with sickle cell. Namely, pregnant patients with sickle cell.

Of course, sickle cell warriors who are with child can face serious complications stemming from pulmonary hypertension and renal disease, among other things, but what's been even more worrisome is the death rate of these women during childbirth. In the West African country of Ghana, the maternal mortality rate has been 12 times higher than that of pregnant women without SCD. (The stats in the U.S. aren't too much better at 10 times higher.) But recently, a new hope has pushed through.

A research team at Ghana's Korle-Bu Teaching Hospital has found a way to slash that mortality rate by 90 percent.

Here's how: Each pregnant woman with sickle cell is now given a designated care team comprised of nurses, obstetricians, and blood and lung specialists, reports The New York Times. Additionally, doctors have put into place new practices, such as pre-cesarean blood transfusions and deep breathing exercises to combat chest pain and prevent lung collapse.

We couldn't think of a better bit of news to kick off this new year right.

Category: Red blood Cell Health, Sickle Cell Disease Tags: sickle cell and pregnancy, sickle cell disease | Comments Off on Mortality Rates in Pregnant Women with Sickle Cell Slashed
A New Hope: Introducing the New and Improved Xickle RBC-Plus
December 27, 2016 by Andrea
Photo: CreateHerStock

For almost a year, we've been in the process of conducting Phase I of our clinical trial -- the first step on Xickle's journey toward FDA approval. This first phase -- a dose-escalation study -- involved participants with sickle cell taking oral doses of SCD-101, the drug-equivalent of Xickle RBC-Plus.

Based on the development of herbal medications like Niprisan, SCD-101 is comprised of a proprietary blend of sorghum, pepper, and clove extracts, and is the newly improved formulation of the original Xickle RBC-Plus. This strengthened composition is set to be released the first of the year (2017), and the clinical evidence we've discovered so far is nothing short of promising.

Our clinical trial participants have reported reduced chronic pain and fatigue, as well as improved sleep and ulcer healing. And we've observed a direct anti-sickling effect on red blood cells that is twice the anti-sickling activity of the initial supplement.

For all the details on our clinical trial and its findings, check out our recent presentation for the American Society of Hematology. Phase II of our trial will begin in 2017.

Xickle RBC-Plus/SCD-101 can protect the structural integrity of red blood cells and can reduce the occurrence of red blood cell clumping. To take advantage of these benefits, visit our website and place your order.

Wishing you all much health and happiness in the new year!

Category: Clinical Trials Tags: American Society of Hematology, ASH, SCD-101, sickle cell clinical trial, sickle cell disease | Comments Off on A New Hope: Introducing the New and Improved Xickle RBC-Plus
The Major Advancement in Sickle Cell Treatment That Has Everyone Talking
November 18, 2016 by Andrea
Photo: Public Domain

Over the past week, there have been some exciting developments toward the treatment of sickle cell. One has to do with Xickle's very own journey from supplement status to pharmaceutical drug status (more on this in the coming weeks). Another has to do with the developments in gene editing from scientists at Standford University School of Medicine.

At Stanford, those scientists have successfully used the gene-editing tool, CRISPR, on the very gene that causes sickle cell -- mending it in stem cells taken from sickle cell warriors. The study, which was published last week in Nature, discusses how Dr. Natthew Porteus and his team repaired the gene mutation in 30 to 50 percent of cells with SCD. Then, those cells were injected into mice, and according to Reuters, those same cells were still functioning properly 16 weeks later.

"What we've finally shown is that we can do it," said Porteus in ScienceDaily. "It's not just on the chalkboard. We can take stem cells from a patient and correct the mutation and show that those stem cells turn into red blood cells that no longer make sickled hemoglobin."

The next step? Human clinical trials. Right now, the plan is to begin those trials in 2018. This is definitely a historic advancement in the treatment of SCD, and we're excited to see where it leads.

For more information on the study and the process planned for human clinical trials, read the entire articles below:

1) ScienceDaily: "Step toward gene therapy for sickle cell disease"
2) Reuters: "Stanford uses CRISPR to correct sickle cell, human trials planned"
3) TheScientist: "More Success Fixing Sickle Cell Gene with CRISPR"

Category: Clinical Trials, Sickle Cell Disease Tags: CRISPR, sickle cell awareness, sickle cell disease, sickle cell treatment | Comments Off on The Major Advancement in Sickle Cell Treatment That Has Everyone Talking
5 Urban Legends About Sickle Cell Disease and How to Overcome Them
November 3, 2016 by Andrea

This time of year, when darkness falls, it's fun to gather around and share spooky rumors of nearby haunts. When it comes to sickle cell, though, spreading truth is a much better option.

Here are 5 sickle cell myths and the truths behind them. Arm yourselves with this knowledge, and educate your community to foster understanding and awareness.

1) Sickle cell is contagious.
Possibly one of the biggest misconceptions out there, this statement is completely untrue. Sickle cell is genetic, so the only way a person can get it is if they inherit one sickle cell gene from each parent. People cannot contract it through blood transfusions, being near someone with it, or any other way other than genetics.

2) There is no cure for sickle cell.
Technically, bone marrow transplantation can potentially cure SCD. However, according to the Mayo Clinic, it's quite difficult to find a donor who's a good match, and the risks of transplantation can be serious. Since donors are scarce and risks are high, treatment is focused on reducing pain and occurrences of crises. The good news, according to Children's Hospital at Vanderbilt, though is that because of major medical advancements in recent years, bone marrow transplants have become safer for children.

3) People with SCD cannot live long lives.
This may have been true decades ago -- back in 1973, life expectancy was just 14 years -- but now, we are seeing warriors living well into old age. In 2014, for example, sickle cell warrior Richard Mitchell celebrated 70 years. Last year, a Nigerian woman named Asiata Onikoyi-Laguda celebrated her 90th birthday!

4) Only Black people can have sickle cell.
In reality, since SCD affects the blood and all people have blood, anyone can inherit it (see myth #1). It is more common, though, in African Americans because of the gene's beginnings in Africa as a natural protection from malaria. SCD is also common in people from Central and South America, the Middle East, Asia, India, and the Mediterranean, reports the American Society of Hematology.

5). Sickle cell is the same for everyone.
Actually, there are several different types of SCD, and some forms -- like sickle cell anemia -- are more severe than others.

Category: Sickle Cell Disease, Sickle Cell Education Tags: sickle cell disease, sickle cell facts, sickle cell myths | Comments Off on 5 Urban Legends About Sickle Cell Disease and How to Overcome Them
5 Must-Read Motivational Books for Every Sickle Cell Warrior
September 22, 2016 by Andrea

Photo: stocksnap.io

While strength is characteristic of many sickle cell warriors, no one can be strong every single day. So, whenever you fell yourself drifting into worry, self-doubt, or depression during a crisis or just a bad day, reach for one of these reads:

1) The Four Agreements by Don Miguel Ruiz
This book shares the "source of self-limiting beliefs that rob us of joy and create needless suffering. Based on ancient Toltec wisdom, The Four Agreements offer a powerful code of conduct that can rapidly transform our lives to a new experience of freedom, true happiness, and love." -amazon.com

2) The Gifts of Imperfection by Brené Brown
"In The Gifts of Imperfection, Brené Brown, a leading expert on shame, authenticity, and belonging, shares ten guideposts on the power of wholehearted living—a way of engaging with the world from a place of worthiness." -amazon.com

3) Peace in the Storm: Meditations on Chronic Pain and Illness by Maureen Pratt
"A devotional for anyone who lives with the spiritually challenging presence of chronic pain and illness. This book contains short chapters that include a Scripture verse, meditation, and prayer focused on one aspect of struggling with health issues, each of which is meant to encourage, inspire, and strengthen the reader's inner spirit and make his or her walk with God more joy- and peace-filled." -maureenpratt.com

4) 365 Days of Positive Thinking by Jenny Kellett
Chock-full of quotes, such as "Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time" and "Nothing is impossible; the word itself says, 'I'm Possible!', this book provides empowering bites of motivation for each day of the year.

5) Chicken Soup for the Unsinkable Soul by Jack Canfield, Mark Victor Hansen, and Heather McNamara
"Sure to become a favorite of readers who love Chicken Soup for its stories of overcoming life's obstacles, challenges, heartbreaks and pain, this book emphasizes triumph in the face of overwhelming odds." -chickensoup.com

Category: Chronic Health Conditions in Children and Adults, Sickle Cell Disease Tags: chronic pain, motivation, sickle cell disease | Comments Off on 5 Must-Read Motivational Books for Every Sickle Cell Warrior
Giving Blood Helps: 4 Sickle Cell Warriors Share Their Stories
September 15, 2016 by Andrea

We all know how important it is to donate blood for sickle cell patients, but we don't always know the actual impact our donations have on the recipients' lives. In honor of donors, soon-to-be-donors, and warriors everywhere this Sickle Cell Awareness Month, we'd like to highlight a few stories from those whose lives have been made better through blood donation.

1) Taytiana's Story

2) Marquita's Story

3) Stacey's Story

4) Joshua's Story

Do you have an experience to share about how blood donation has touched your life -- whether a donor or warrior? Tell us in the comments below!

Category: Chronic Health Conditions in Children, Sickle Cell Disease Tags: american red cross, blood donation, sickle cell awareness month, sickle cell disease, sickle cell stories | Comments Off on Giving Blood Helps: 4 Sickle Cell Warriors Share Their Stories