We've all been warned never to stare directly in to the sun -- even during a solar eclipse like the one that just passed over the U.S. a few days ago. Doing so could lead to retina damage and permanent vision loss.
For sickle cell warriors, though, protecting their eyes from the same type of injury is more of a regular concern -- a concern that special glasses cannot prevent. According to the Brazilian Journal of Hematology and Hemotherapy, 42 percent of SCD patients will develop sickle cell retinopathy (a disease of the retina that can cause vision impairment and loss) by the time they reach their 20s. This, like many other sickle cell complications, can be attributed to the retina not receiving the amount of oxygen it needs from the red blood cells.
And while there may not be a guaranteed way to avoid sickle cell retinopathy, early detection can help and introduce patients to certain therapies, such as laser therapy or surgical options, to curb further loss of sight. "Nobody with sickle cell disease should lose vision," Dr. Adrienne Scott, an assistant professor at Johns Hopkins's Wilmer Eye Institute told the university's "Rising to the Challenge" campaign writers in a recent interview. "We need to conduct the right studies, the right clinical trials to establish evidence-based guidelines on how we should screen sickle cell patients, what imaging tests can best identify those at risk for vision loss, and how early we should intervene with treatment."
Have you experienced signs of sickle cell retinopathy? Share your story in the comments below.
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Sickle Cell Warriors and Vision: Concern Extends Beyond the Solar Eclipse
August 25, 2017 by AndreaCategory: Research, Sickle Cell Disease Tags: retinopathy, sickle cell | Comments Off on Sickle Cell Warriors and Vision: Concern Extends Beyond the Solar Eclipse
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New Drug Approval for Sickle Cell is Just the Beginning
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
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New Study Hopes to Show that Exercise is Actually Safe for Kids with Sickle Cell
May 30, 2017 by Andrea
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.
Category: Chronic Health Conditions in Children, Exercise, Research Tags: benefits of exercise for children, Lurrie Children's Hospital, National Heart Lung and Blood Institute, sickle cell grant | Comments Off on New Study Hopes to Show that Exercise is Actually Safe for Kids with Sickle Cell
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World Cord Blood Day Seeks to Raise Awareness for Sickle Cell and Other Life-Threatening Diseases
April 10, 2017 by Andrea
A new awareness event that will benefit sickle cell disease, among others, is set for November 15, 2017. This event, the first-annual World Cord Blood Day, seeks to educate the public about how stem cells taken from blood in the umbilical cord is a non-controversial method of retrieving and using stem cells to treat dozens of diseases, including SCD.
According to a recent press release from Save the Cord Foundation, the event's organizers, more than 35,000 cord blood transplants have been done all over the world since 1988 and have treated 80-plus life-threatening diseases -- sickle cell being one of them. Research relating to stem cell transplants of this kind show that the transplants work best when the cells come from a relative (although research relating to donor stem cells is pushing along and has worked in some cases). The thing is, saving cord blood is literally a once-in-a-lifetime opportunity, as it must be done at the time of birth. World Cord Blood Day will help make people aware of how important it can be to save and bank this resource.
"We are truly excited about this opportunity to expand cord blood education worldwide while providing a platform for discussion focused exclusively on this valuable medical resource," Charis Ober, Executive Director of Save the Cord Foundation, said in the press release.
So far, partners for this premier event include the Cord Blood Association, Be the Match, the World Marrow Donor Association, the American Association of Blood Banks, and the Foundation for the Accreditation of Cellular Therapy. Participation in the very first World Cord Blood Day is easy: You can sign up to learn about events near you, attend the free virtual conference, and/or join in the discussion on social media using the hashtag #WCBD17.
Another movement to help raise awareness about sickle cell treatment and other diseases? That's a definite win.Category: Chronic Health Conditions in Children, Research, Resources for Parents Tags: cord blood, sickle cell, stem cells, world cord blood day | Comments Off on World Cord Blood Day Seeks to Raise Awareness for Sickle Cell and Other Life-Threatening Diseases
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How Sickle Cell Research May Lead to a Cure for HIV-1
January 30, 2017 by Andrea
For decades, it's been common knowledge that people with sickle cell disease have built-in protection from malaria. Initially, it was assumed that this protection came in the form of actual resistance, prevention of infection. It wasn't until 2011 that researchers discovered that infection does indeed happen, but sickle cell disease hinders malaria from taking over. Essentially, malaria and the body coexist peacefully.
And now, new research out of Howard University in Washington, D.C. shows that malaria may not be the only disease those with sickle cell are able to fend off more easily than others. On Thursday (Jan. 26), scientists at Howard's Sickle Cell Center announced a breakthrough relating to why sickle cell warriors seem to contract HIV-1 at lower rates than others.
Their study, which was published in the December issue of "Blood Advances," shows that the way iron is metabolized by sickle cell patients gives these same patients protection from HIV-1. In a statement to Howard's Office of University Communications, one of the lead researchers, Dr. Sergei Nekhai, said, "Understanding mechanisms of natural barriers for HIV-1 infection, such as these that we described in sickle cell disease, may open new therapeutic opportunities for treatment and may provide new approaches for the permanent cure of HIV-1 infection."
For more information on this study and its findings, check out the full article here.Category: Research, Sickle Cell Disease Tags: HIV-1, Howard University, sickle cell | Comments Off on How Sickle Cell Research May Lead to a Cure for HIV-1
