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  1. New Study Hopes to Show that Exercise is Actually Safe for Kids with Sickle Cell

    May 30, 2017 by Andrea

    frank-mckenna-135720

    Whether it's at school recess or with friends in the neighborhood on weekends or during summer break, there's no denying that kids love to play -- and play hard. From intense games of tag to spirited jaunts on the jungle gym, kids can get into vigorous exercise without even trying too hard. Such robust romps worry parents and caregivers of young sickle cell warriors because they believe that increased inflammation brought on by exercise could send their child into a full-on crisis. A new study -- which the National Heart, Lung, and Blood Institute funded with a $2.7 million grant -- hopes to prove that kids with sickle cell can safely partake in playtime, allowing them to not only get much-needed social interaction with their peers, but also avoid settling into a sedentary lifestyle that could impede their physical fitness at a young age.

    As reported by the Ann & Robert H. Lurrie Children's Hospital of Chicago, Dr. Robert Liem, a lead researcher on this project, believes there are certain levels of exercise that kids with SCD can handle, and during the five-year study, he plans to compare the post-workout effects of 70 kids with sickle cell and 70 kids without sickle cell. "In the upcoming study, the team will look at the different ways moderate and vigorous intensity physical activity affects inflammation," states a news release from Lurrie Children's Hospital. "Their hypothesis is that exercise is safe in this population and does not provoke sickle cell disease related complications. With these data, Liem hopes to develop a future clinical trial to look at whether or not regular exercise may instead have a beneficial impact on this disease."

    The study is expected to kick off this fall, and will include patients at five other hospitals in the country. “We want to see how the genetic changes regulate the inflammation response to exercise. We hope this will provide important evidence of exercise safety in kids with sickle cell disease,” Dr. Liem stated in an interview with the hospital.

    Read more about that study here.

    Additionally, our own clinical trial has shown that SCD-101 (the drug equivalent of Xickle RBC-Plus) may improve a patient's ability to exercise. Anecdotal reports we've received from participants in our trial have stated that warriors taking SCD-101 can walk further and faster. This is great news for kids (and adults) with sickle cell all over the world.

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  2. Sickle Cell and Menstruation: How to Raise Awareness and Advocate for Better Care

    May 26, 2017 by Andrea
    Photo: pxhidalgo/istockphoto.com

    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.

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  3. 4 Ways to Increase Your Hemoglobin Levels

    May 16, 2017 by Andrea
    Photo: Flickr/Scott Robinson via CC by 2.0

    Photo: Flickr/Scott Robinson via CC by 2.0



    Because sickle cell warriors already have a lower red blood cell count than non-warriors -- and the RBCs that are present are susceptible to sickling -- they also possess lower amounts of hemoglobin. Hemoglobin is a protein found in red blood cells that carries oxygen throughout the body, and when that oxygen can't get to where it needs to go, a pain crisis can set in. Here, we're bringing you four ways to increase your hemoglobin, thus helping reduce painful episodes.

    1. Get your daily dose of Xickle RBC-Plus.
    While this doesn't exactly produce red blood cells, it is specifically made to help maintain their structural integrity in sickle cell warriors. Xickle RBC-Plus (the supplement version of the drug SCD-101), can help ensure that RBCs can flow through the blood vessels easily, delivering oxygen to various parts of the body. Combined with the nutrient sources below, warriors can improve red blood cell health.

    2. Raise your iron intake.
    Iron merges with other proteins in your body to create the hemoglobin that's found in RBCs. If you don't have enough iron in your system, you won't be able to make enough hemoglobin to oxygenate your organs and tissues. To be sure you're getting enough, reach for foods like lean meats, shrimp, whole grains, raisins, spinach, and nuts.

    3. Load up on fresh fruits.
    Skip the juice (it's mostly sugar, anyway), and up your body's supply of vitamin C and folate. Vitamin C helps the body absorb iron, and folate is a key component in red blood cell production. Examples of fruits to enjoy include apples, oranges, papayas, bananas, strawberries, and grapes, just to name a few. You can also get folate from broccoli and greens, for example.

    4. Boost that B-12.
    Another nutrient imperative to the development of red blood cells is vitamin B-12. Seafood is rich in this nutrient, so enjoying more salmon, crab, tuna, and the like is definitely a good move. And, if your doctor recommends it, you can take B-12 as a vitamin supplement, as well.

    Managing your intake doesn't need to be overwhelming, either. Check out on of these apps to help you track and reach your hemoglobin level goals.

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  4. “Immortal” BEL-A Cell Line is a Huge Breakthrough for Blood Transfusions

    May 9, 2017 by Andrea

    petri dish

    Last year, we talked about the potential of artificial blood being created and used to give blood transfusions to those in need when supplies of donated blood fall short. Since then, there has been an exciting new development in this technological space: An immortal stem cell line -- the first of its kind ever -- has been produced, allowing scientists to engineer an unlimited supply of artificial red blood cells whenever they're needed.

    Known as BEL-A (Bristol Erythroid Line Adult), these "immortal" cells were created by researchers at the University of Bristol in the UK using blood from volunteers who donated for the purpose of this study. Science Alert reports, "To create these 'immortal' cells, [the researchers] effectively trapped the adult stem cells in an early stage of development, which means they can divide and create red blood cells forever without dying, which avoids the need for repeat donations." Such findings will enable scientists to more easily and quickly harvest and maintain large amounts of red blood cells.

    The purpose of red blood cells is to carry oxygen throughout the body -- this is especially important for sickle cell warriors, as sickled red blood cells can disrupt this flow and block blood vessels, causing pain and potentially, a crisis. "Cultured red blood cells provide such an alternative and have potential advantages over donor blood, such as reduced risk of infectious disease transmission, and as the cells are nascent, the volume and number of transfusions administered to patients requiring regular transfusions (sickle cell disease, thalassaemia myelodysplasia, certain cancers) could be reduced, ameliorating the consequences of organ damage from iron overload," explains a recent article from Nature Communications.

    Clinical trials for the artificial blood created by BEL-A cells are expected to begin by the end of 2017. If everything goes well and the product is proven safe and effective in humans, it can begin being used to treat people in need all over the world.

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  5. 3 Apps That Make Monitoring Your Nutrition Easy

    May 1, 2017 by Andrea

    nutritional balance

    Adequate nutrition is important for everyone, especially for sickle cell warriors who need to take in even more calories, vitamins, and minerals than people without SCD. But honestly, maintaining a proper nutritional balance on your own isn't always easy -- even when you think you've eaten enough fruits, vegetables, protein, fiber, etc., it isn't always the case. So, how can you ensure you're truly eating right? Try out the apps below, and then, choose the best option for you.

    1. Samsung Health
    This free app comes pre-installed on every Samsung phone and makes tracking your exercise, nutrition, and even sleep simple. Set a calorie goal in the app, record what you eat, and when you meet that goal, you'll receive a virtual badge. You can also earn badges by eating well-balanced meals. Monitor your progress with the Nutrient Balance Score, and see how much more (or less) you need of certain nutrients to reach that daily recommended intake.

    2. MyPlate
    With MyPlate, you can set nutrient goals and track your consumption of them for each meal. It's easy to do, too, since the app has a host of searchable foods and drinks, along with their associated nutrients saved in its system. There's also an online community message board to participate in, if you choose.

    3. ShopWell
    Like having a nutritionist in your pocket (or purse), this app is the perfect grocery store shopping buddy. Scan foods at the store to discover their health benefits (or lack thereof) and connect your store's loyalty card to receive healthy recommendations of what to buy. Very customizeable, this app also allows you to chose ingredients to avoid when shopping, such as gluten, nuts, and soy, as well as choose ingredients to aim for (like heart health, vegan options, or general health).

    Do you use an app to monitor your nutritional balance that's not on this list? Share it in the comments below!


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