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.
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Rare Disease Day is Here. Find an Event Near You.
February 28, 2018 by AndreaCategory: 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.
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This UK-Based Org. Uses Stories to Promote Successful Change in Healthcare
February 19, 2018 by Andrea
"Everybody has a story. And there's something to be learned from every experience." - Oprah
One of the most effective ways of connecting with others can be through storytelling. It allows us to envision ourselves in similar circumstances as the people in the stories and better empathize with what those people may be going through, learn from their experiences, and/or spur us to get involved in something we may never have considered before. In fact, Oprah Winfrey has built an empire by sharing her story, as well as those of countless others, to inspire, motivate, unite, and initiate progress.
Incorporating a similar premise, the Cambridge, England-based organization Patient Voices, which has been at work since 2003, seeks to record and share stories of patients living with various conditions for the purpose of helping improve the quality of healthcare and gather valuable insights for research reasons.
One segment of stories they produce called "Terrific Teens" is part of a larger project that also involves workshops for the teen patients and their families -- and of the two conditions featured in this collection (so far), one compiles the stories of teen sickle cell warriors. Told in short videos, each one ranging in length from one-and-a-half minutes to three-and-a-half minutes, each teens' story gives a glimpse into their lives, their experiences with crises, and how they cope and continue to push through daily to lives their best lives despite challenges.
To listen to the individual stories of these teen warriors, their parents, and their siblings, click here.
Category: Resources for Parents, Sickle Cell Disease Tags: patient voices, sickle cell | Comments Off on This UK-Based Org. Uses Stories to Promote Successful Change in Healthcare
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Boston School District Finally Recognizes Sickle Cell Disease as Impeding a Student’s Education
February 13, 2018 by Andrea
Last week, the Boston Globe reported that the Boston, Massachusetts public school system has officially decided to recognize sickle cell disease as a disability that can affect a child's education. For a condition that has been known to exist for more than 100 years, this is long overdue.
Because of the occurrence of crises, hospitalizations, and other complications that can arise with sickle cell warriors, students are often forced to miss classes -- upwards of 20-30 days, according to a 2006 study. And as recently as 2016, the journal article "School Performance and Disease Interference in Adolescents with Sickle Cell Disease" confirmed that "missing school can have [a] significant impact on educational attainment in adolescents with SCD; attainment is measured through grade retention, special education rates, and letter grades." The article goes on to say, "Difficulties associated with missed instruction are further complicated by subject matter that builds on previous knowledge such as mathematics and foreign languages. Additionally, adolescents may miss exams and standardized tests."
For these very reasons, the Center for Law and Education, along with the Massachusetts Law Reform Institute, filed a complaint against the Boston school system back in 2015, the Globe reports. This lead to a series of adjustments in school policy and ultimately to the official recognition as stated earlier. According to the Globe, the school system has also created a Sickle Cell Advisory Group.
Every school district in this country can look to Boston as an example of how to reform its own policies addressing students with disabilities, so all students do indeed receive a "free and appropriate" education. Does your local school district recognize SCD as a disability that can inhibit a student's education? Tweet us @XickleRBC and let us know!Category: Chronic Health Conditions in Children, Resources for Parents, Sickle Cell Disease Tags: Boston, sickle cell, students with disabilities | Comments Off on Boston School District Finally Recognizes Sickle Cell Disease as Impeding a Student’s Education
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How Jordin Sparks and Family are Turning Grief into Action After Sickle Cell Loss
February 5, 2018 by Andrea
Photo: GoFundMe
While it is more typical in this day and age for sickle cell warriors to live well into adulthood -- some into their 90s even! -- complications can still arise that don't allow for that to happen. Just last week, singer and American Idol alum Jordin Sparks first took to Instagram asking for prayers for her step-sister. "Please keep my little sister, Bryanna, in your prayers," she wrote. "She's suffering from complications from sickle cell and is in the ICU fighting for her life." Later, she confirmed that her sister had passed.
To celebrate Bryanna's life, the family has created a GoFundMe, so in lieu of sending flowers, people can donate to help raise awareness of SCD, provide assistance with medial bills of other warriors, and establish a "Bry's Corner" in hospitals around the country, so patients can have a "fun space" to spend time in during hospital stays.
The fact that some warriors still don't get a chance to live to adulthood confirms what we've already known even further -- much more research and resources are needed to discover a cure and to help extend the lives of all warriors until a cure is found.
According to WHAS11, an ABC affiliate out of Louisville, Kentucky, doctors at the city's Norton Children's Hospital are working to do just that. They've created a transition program to help teens and young adults be much more prepared for aging out of pediatrics and into adult care. "We try to practice with them, speaking up, asking questions, making [their] own appointments," clinical social worker Spencer Moorman tells the news station.
Currently, the adults and teens in this new program attend monthly support meetings to help them stay on top of their health as they move through the process, ultimately becoming solely responsible for their care.
Programs like this one are a good start, but we still have a long way to go.Category: Chronic Health Conditions in Children and Adults, Sickle Cell Disease Tags: bryanna jackson-frias, jordin sparks, sickle cell | Comments Off on How Jordin Sparks and Family are Turning Grief into Action After Sickle Cell Loss
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Case Study May Give Parents New Option for Ensuring Children Aren’t Born With Sickle Cell
January 29, 2018 by Andrea
Photo for illustrative purposes only
There's been a push among sickle cell advocates to #KnowYourGenotype. The thought behind this movement is that if everyone has their blood tested before marrying and having children, there can be a significant reduction in sickle cell births, ultimately leading to an eventual eradication of the disease itself.
While this is good in theory, human emotions can make things complicated. What if two people who are in love discover that they both carry the trait, for example? The inner conflict and turmoil that must create (and has created over decades), we're sure, is unbearable.
But what if there was another way -- a better way?
On January 18, the medical journal JBRA Assisted Reproduction published a recent case study on how in vitro fertilization, embryo selection, and cord blood could be that better option. In this case, a South American couple -- both carriers of sickle cell trait -- went through six cycles of in vitro to produce 53 embryos. As reported by Sickle Cell Anemia News, of the 53 embryos, 15 had normal hemoglobin, 12 had sickle cell, 20 had sickle cell trait, and 6 were undetermined.
If the couple was only looking to ensure having a baby without sickle cell or without the trait, they'd have 15 embryos to choose from; however, these parents already had a daughter who was born a sickle cell warrior, so they wanted an embryo to create a baby who's cord blood stem cells were a match for their daughter, and therefore, could be used in treating her. The couple ultimately had a healthy baby boy, and the cord blood transplantation into his sister was successful, presenting a potential new option for parents while reducing the amount of sickle cell births and treating current sickle cell warriors at the same time.Category: Research, Sickle Cell Disease Tags: cord blood, sickle cell, stem cells | Comments Off on Case Study May Give Parents New Option for Ensuring Children Aren’t Born With Sickle Cell
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How to Stay Hydrated When You’re Sick of Simply Drinking Water
January 22, 2018 by Andrea
Sometimes you just want to shake things up a bit -- give your taste buds something to be excited about. If you're tired of drinking glass after glass of water all day long, try adding hydrating foods into the mix.
As Dr. Rima Kleiner told NBC News in an interview last year, the food we eat actually gives us about 20 percent of our total water intake each day. "Many vegetables and fruits are mostly comprised of water (some are more than 90 percent water), which really helps to contribute to our fluid intake and keep us hydrated," Dr. Kleiner continues. Here's how to vary your water sources and still reach the equivalent of eight to ten glasses each day, as recommended by the CDC:
1) Snack on cucumbers.
Clocking in at 96 percent water, more per serving than any other veggie except iceberg lettuce, cucumbers are the perfect alternative to drinking in your hydration.
2) Enjoy a salad.
Iceberg lettuce may not be loaded with nutrients like dark, leafy greens are, but if you'd like your salad to also stand in as a method of getting in your water for the day, go ahead and make it chock-full of iceberg lettuce, which, like cucumbers, is also 96 percent water.
3) Crunch on carrots.
Your favorite nosh on the vegetable tray is also a good source of water -- it's made up of 90 percent of the stuff. And with no prep time needed, baby carrots make for a quick and easy snack.
4) Choose skim milk.
Not only will you cut down on fat content, you'll also have a different drink to reach for to satisfy your hydration needs. Skim milk is comprised of 91 percent water and is also filled with nutrients such as vitamins A and B12, potassium, calcium, and more.
5) Sip some soup.
Staying warm is also essential for warriors during these winter months, so why not combine that with the hydration factor? You can meet both needs with a bowl of soup -- or even just broth.
6) Feast on fruits.
Many fruits are made up of at least 80 percent water -- strawberries, watermelon, and grapefruit are just a few examples. These options also provide other health benefits since they are also rich in nutrients such as fiber, antioxidants, vitamin C, and potassium.
Of course, drinking water will always be super important to staying hydrated, but it's not the only way. If you incorporate foods that are loaded with water, you can achieve the same daily hydration goals.Category: Healthy Food, Sickle Cell Disease Tags: sickle cell, water-rich foods | Comments Off on How to Stay Hydrated When You’re Sick of Simply Drinking Water
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The Blood Donor Shortage and How You Can Help
January 16, 2018 by Andrea
All that snow, ice, and flooding that hit a slew of states a couple weeks ago didn't just ground flights, close schools, and interrupt other plans, it also caused blood drives to be cancelled, resulting in a severe blood donor shortage, according to TIME. Hospitals rely on blood donors to help save the lives of people during emergencies, as well as the lives of those who live with diseases such as sickle cell. Just take a quick look at the Red Cross's homepage, and you'll see a bold call: "Blood Donations Urgently Needed", followed by an easy way to find a drive near you.
TIME reports that in addition to winter weather, a severe flu outbreak has also hampered the collection of donations -- a loss of about 28,000. The article goes on to say that the blood the Red Cross needs most right now is Type B negative and Type O negative, the latter being the universal blood type. Platelets, which must be used within the first few days of donation, and therefore run out quickly, are also desperately needed.
As January is National Blood Donor month, now is the perfect time to help the Red Cross recover from its donation deficit, and ensure that more lives can continue being saved. Real talk, in order to maintain a healthy supply of blood, the Red Cross states that it must receive more than 13,000 donations per day! Unfortunately, though, only 10 percent of eligible U.S. donors give blood.
It doesn't have to be that way, though. If you're 17 years of age or older, weight at least 110 pounds, and are generally healthy, you can donate. And, if you'd like to make sure your donation specifically goes to a sickle cell warrior, you can do that, too.
Why not start today?Category: Red blood Cell Health, Sickle Cell Disease Tags: blood donation, national blood donor month, red cross, sickle cell | Comments Off on The Blood Donor Shortage and How You Can Help
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Three 30-Day Challenges Sickle Cell Warriors Can Embrace This Year
January 8, 2018 by Andrea
CreateHer Stock
It's easy to sit down and write a list of New Year's resolutions, but without an actual plan of action, more than likely, the goals on that list will barely even begin to be reached. That's why we've rounded up three 30-day challenges that can actually help you reduce stress and increase overall wellness -- things that are known to help limit the occurrence of crises.
1. Goalcast's 30-Day Growth Challenge
If you're looking to learn how to let go of the past, become more productive, increase knowledge, and reduce stress, among other things, try this action plan. The creator even emphasizes the importance of not striving for perfection when it comes to its completion, rather focus on doing your best and finishing the tasks that are most meaningful to you.
2. Sparefoot's 30-Day Decluttering Challenge
When you aren't feeling your best, the last thing you want is to be surrounded by a space that's messy and disorganized. Stay ahead of the game with this challenge, which will lead you through cleaning out your space one area at a time, because let's be honest, conquering clutter all at once is way too overwhelming.
3. Odyssey's 30-Day Journal Challenge
Not up to cleaning, exercising, or leaving your warm bed in general? You can always journal. Writing your feelings down is a proven method of decreasing anxiety and boosting creativity. With 30 prompts, you won't run out of inspiration.
Are you participating in any 30-day challenges this new year? Tweet us @xicklerbc and let us know!Category: Self-Care, Sickle Cell Disease Tags: 30-day challenge, new year, sickle cell | Comments Off on Three 30-Day Challenges Sickle Cell Warriors Can Embrace This Year
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Reflecting on Sickle Cell Research, News, and More: A Year in Review
January 2, 2018 by Andrea
Like many of you, we're ringing in the new year with a little bit of reflection. We reached many milestones in 2017, including entering the second phase of our clinical trial and being recognized as a "promising new drug for the treatment of sickle cell disease."
Plus, we published more than 50 new posts about sickle cell news, research, and more. As part of our period of reflection, we decided to comb through all of those posts from the past year to find the 12 most popular ones. So, in case you missed any (or you'd like to read them again) here they are: a collection of articles that received the most eyes and the most engagement throughout the 1-7.
1. New Video Game Aims to Infuse Fun with Sickle Cell Awareness
2. How Sickle Cell Research May Lead to a Cure for HIV-1
3. How One Sickle Cell Warrior Turned Her Health Status Into a Thriving Business
4. Gene Therapy Reverses French Teen’s Sickle Cell
5. How to Turn the March for Science’s Actions into Sickle Cell Activism
6. Sickle Cell and Menstruation: How to Raise Awareness and Advocate for Better Care
7. 4 Tips That Make Managing Sickle Cell at College Simpler Than You Thought
8. 3 Ways to Cope with Sickle Cell Pain — That Aren’t Meditation
9. T-Boz Releases New Memoir Just in Time for Sickle Cell Awareness Month
10. 12-Year-Old Writes Comic Book to Help Kids Battle Their Illnesses
11. The McCourty Twins are Coming Through with a New SCD Fundraiser
12. The Black Panther Party and Its Dedication to Sickle Cell Awareness
While 2017 definitely had its challenges, just taking even a few minutes of reflection to consider all that you've accomplished in the past 12 months can leave you with so much more hope, determination, and motivation. Use that newfound positivity to push through this new year and make 2018 even better than the last.Category: Research, Sickle Cell Disease Tags: happy new year, sickle cell, year in review | Comments Off on Reflecting on Sickle Cell Research, News, and More: A Year in Review
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Deer Blood Research May Lead to Advancements in Sickle Cell Treatment
December 26, 2017 by Andrea
Some fascinating news broke last week: After 170 years of wondering why the red blood cells of deer sickle, scientists have finally discovered what causes the distortion.
As reported in Science magazine, researchers compared deer blood in species that do have sickling properties with the deer blood in species that don't and found that an amino acid change was the catalyst. "In the sicklers, one amino acid had switched from glutamic acid to valine," the Science article states. "The same amino acid swap happens in the faulty form of hemoglobin that triggers sickle cell anemia, but at a different location in the molecule."
While they've solved one mystery, though, a few still remain -- why is that cell sickling in deer blood doesn't cause the animals to fall ill like it does in humans? Why do red blood cells in deer sickle at high oxygen levels, rather than at low oxygen levels as it happens in people? And how exactly does the amino acid switch help deer and humans resist malaria? Further study will hopefully reveal all the answers and lead to improved treatment of sickle cell.
Be sure to get all of the details on this riveting research by reading the full article here.Category: Research, Sickle Cell Disease Tags: sickle cell, sickle cells in deer | Comments Off on Deer Blood Research May Lead to Advancements in Sickle Cell Treatment
