July 25, 2017 by Andrea
Photo: Photo by Brandon Morgan on Unsplash
Don't get us wrong -- we're all about meditation and self-hypnosis as a coping method for those less-severe moments of sickle cell pain. They're backed by research and work really well for some people. The key word there, though, is "some."
To be honest, many others simply just don't like meditation and can't get into it. And if they don't like it, they won't practice it, and therefore, won't reap any of the benefits. Sound like you? #NoShame. Try these alternative coping styles and stick with the one(s) that work best for you.
1) Turn up that playlist. Listening to your favorite jams not only helps to lower stress -- which can intensify feelings of pain -- but it can also help boost your mood in general. "As music can absorb our attention, it acts as a distraction at the same time it helps to explore our emotions," explains this Psych Central article.
2) Choose your support squad. Sharing your experiences with others who truly understand what you're going through will help you feel validated, give you a safe space to release any pent-up frustrations, and provide you with even more coping methods -- tested by other Warriors.
3) Try a Swedish massage. Massages loosen muscles, increase oxygen levels in the blood, improve overall circulation, and reduce stress and anxiety, just to name a few. And the Swedish modality is a less intense form, which makes it a promising alternative for people living with SCD. As Sickle Cell Warriors recommends, though, it's best to seek this type of treatment when pain is less than a level 5, as triggering movement of already-sickled cells may worsen the pain.
And as always, take care to prevent a crisis before it occurs by staying hydrated, avoiding extreme temperatures, getting plenty of sleep, and doing light exercise. You can also try adding Xickle RBC-Plus to your regular routine to aid in reducing the incidence of cell sickling.
What other ways do you use to cope with sickle cell pain? Share them in the comments below!
Category: Chronic Health Conditions in Children and Adults Tags: coping skills, sickle cell | Comments Off on 3 Ways to Cope with Sickle Cell Pain — That Aren’t Meditation
July 17, 2017 by Andrea
Photo: CreateHer Stock
Regular exercise is good for everyone -- it keeps your heart healthy, your body in shape, and it can boost your overall mood. If you're living with sickle cell, though, it can be difficult to determine what types of fitness routines will be beneficial without sending you into a crisis.
To help with that, we've rounded up four fun and effective low-impact workouts (the consensus among doctors and researchers is that low-impact is best for those with SCD) that will get you started on a warrior-friendly exercise regimen.
1) Go for a hike. A brisk walk for 30 minutes to an hour a day can help tone your legs and glutes and also help you drop inches from your waistline. Instead of the typical walk on a treadmill or around your block, opt for a change of scenery and try out a walking trail at your local park. Here are some of the best places to hike in every state.
2) Try a spin class. This low-impact yet intense workout covers your cardio and strength-training goals. Also, you get to decide what level of intensity is most comfortable for you by setting your bike's resistance and your own pace. A great alternative to biking outside, you'll never have to worry about bad weather ruining your plans -- plus, you won't have to purchase a bike if you don't already own one. Be sure to monitor your heart rate, though, so you stay in your safe zone.
3) Dance your way to better health. Dance fitness classes, such as Zumba, which combines moves from a variety of Latin-inspired dances set to the latest music, are also great low-impact options. As with other choices we've mentioned, you can Zumba at your own pace and take breaks as needed. Why choose dance fitness over a few minutes on the elliptcal? Honestly, it's just more fun. It's good to switch things up and keep challenging yourself with something new, too.
4) Row your boat. Taking a vacay this summer? Why not spend some time enjoying nature while getting some exercise at the same time? Rowing is a great way to work not only your upper body, but also your legs and back muscles. This sport can also be done with friends and family for even more fun. Even if you can't make it out on the water, the indoor rowing machine at your local gym can give you the same benefits.
No matter which workout(s) you choose, always remember to stay hydrated and stretch your muscles before and after your activity. Did we miss your favorite routine? Tell us how you love to stay fit in the comments below!
Category: Exercise Tags: exercising, fitness, low-impact workouts, sickle cell, Zumba | Comments Off on The 4 Best Exercises for Sickle Cell Warriors Who Want to Have Fun While Getting Fit
July 11, 2017 by Andrea
Photo by freestocks.org on Unsplash
After more than 20 years of waiting, a new drug for the treatment of sickle cell was finally approved by the FDA on Friday (July 7, 2017), bringing the total to two (the other being Hydroxyurea). Developed by Emmaus Medical, the new drug Endari uses the amino acid L-glutamine to help reduce the occurrence of cell sickling in warriors ages 5 and older. The FDA reports that side effects for Endari include constipation, nausea, headache, abdominal pain, chest pain, back pain, coughing, and pain in the extremeties.
In a recent interview with NBC BLK, Dr. Alexis A. Thompson, head of Hematology at the Ann and Robert H. Lurrie Children's Hospital of Chicago, said, "I am hoping we are finally seeing channels opening and that this will be the first of many new drugs to hit the market [for sickle cell disease]."
And it appears Dr. Thompson's hope is indeed on its way to becoming reality. For one thing, SCD-101, our own new drug for sickle cell, is currently undergoing clinical trials. So far, the response has been highly encouraging -- the "Blood" journal has recognized SCD-101's ability to reduce cell sickling, increase exercise ability, and improve sleep and ulcer healing. And, as of yet, there have been no side-effects discovered. Even better, the supplement form of SCD-101 known as Xickle is available for use now.
Nature.com reports that a slew of other sickle cell drugs are in development now, as well, which is incredibly encouraging. Having options for sickle cell treatment is important for many reasons: Every person's body does not react to every drug in the same way and certain health insurance plans may only cover certain sickle cell drugs, just to name a couple.
This is just the beginning of a potentially huge deluge of breakthroughs and treatments for sickle cell -- treatments that can ensure that warriors of all ages receive the medicines they need to live long, healthy, happy, lives.
Category: Clinical Trials, Research Tags: endari, FDA, SCD-101, sickle cell, sickle cell drugs, Xickle | Comments Off on New Drug Approval for Sickle Cell is Just the Beginning
July 3, 2017 by Andrea
Photo: Instagram/@therealtboz
After Prodigy's passing late last month, celebrities and fans alike flocked to social media to express condolences and shock at the news. Many people even inquired as to what sickle cell was and how someone got it -- another clear sign that this disease does not even come close to getting the attention and research support it needs.
One celeb, though -- T-Boz of the R&B girl group TLC -- sent off a series of tweets that were perhaps the most impactful, as they came from a place of true understanding and passion for awareness. A sickle cell warrior herself, T-Boz has had a few near-death experiences, which she shares in her upcoming book, "A Sick Life" (out in September, which is also Sickle Cell Awareness Month). Never one to keep quiet on the issue, T-Boz hosts annual fundraisers for sickle cell, speaks on it regularly in interviews, and writes about it in her books and poetry.
In the following tweets, she calls out the SCDAA for not doing enough and calls on the Black Lives Matter movement to do more in regard to sickle cell awareness. Read what she has to say, heed the call, and get involved in any way you can.
Category: Sickle Cell Disease Tags: Prodigy, sickle cell awareness, T-Boz | Comments Off on T-Boz Does Not Hold Back on Her Call for Us All to Get Involved in Sickle Cell Awareness
