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  1. Defying the Odds, This Sickle Cell Warrior is Still Living a Full Life at 90

    December 28, 2015 by Andrea
    SCD warrior Asiata Onikoyi-Laguda recently welcomed her 90th year! (Photo: CreateHER Stock)

    SCD warrior Asiata Onikoyi-Laguda recently welcomed her 90th year! (Photo: CreateHER Stock)



    'Tis the season of comfort and joy, so we've been focused on bringing you sickle cell news and stories that reflect perseverance and a hopeful future. Continuing with this trend, today, we're highlighting a woman named Asiata Onikoyi-Laguda -- a sickle cell warrior at 90 years old!

    According to The Cable, a Nigerian newspaper, Asiata is thought to be the oldest living person with SCD. What makes this even more amazing? When she was born back in 1925, people with sickle cell were only expected to live to the age of 5. The Cable reports: "Due to the level of illiteracy at the time of her birth, she was never diagnosed to have had sickle cell; she just had all the symptoms, including terrific pain, which hindered her from going to school till she was about 12 years old." The article also reveals that Asiata has no dietary restrictions, even to this day. "She eats salt, eggs, meat, sugar, fried food, as it pleases her.

    "Asiata does say, though, that she does everything in moderation. She tells The Cable: “I have always maintained a middle road in life. Moderation keeps you going, when those who indulge themselves have lost their balance."
     
    To read the entire article, click here.

     

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  2. New Sickle Cell App Aims to Reduce Hospital Readmissions

    December 14, 2015 by Andrea
    Screenshot/Google Play

    Screenshot/Google Play



    Last year, we introduced you to a new cell phone app that every sickle cell warrior should download -- the VOICE Crisis Alert App. While that app is designed to empower kids and adults in the general public who are living with sickle cell disease to record and communicate pain events easily, a new app developed by Children's National is concentrating more on minimizing hospital readmission rates for adolescents with SCD. 

    With a focus on the clinical research angle, rather than the consumer market, the PROMIS for Pain Management App -- available on Android and iPhone -- requires a PIN to log in to the system, and as of now, PINs are only available to patients who are involved in clinical trials with Children's National. To encourage participants to regularly use the app the way that it is intended, a rewards system offering things such as badges and gift cards has been put into place.

    Using the National Institute of Health's Patient Reported Outcomes Measurement Information System (that's where the name "PROMIS" comes from), the initial goal of this app is to track weekly pain, along with patients' reaction to /coping with the pain. According to Children's National, "The next step is to develop an alert system (alerts, e-mails, text messages) and interventions to increase patient/provider engagement, to improve outpatient pain management, and to decrease hospital readmission. The long-term goal ... is to improve outpatient monitoring and pain management and decrease readmission rates in SCD patients."


  3. Flying Doctors Nigeria Makes Hospital Access Quicker and Easier for Sickle Cell Warriors

    December 7, 2015 by Andrea
    Photo: CreateHER Stock

    Photo: CreateHER Stock

     

    Many of the extraordinary people working behind the scenes to care for sickle cell warriors often fly under the radar, and we miss their stories amidst the rush of other news that hits us on a daily basis. One of those stories is about UK native, Dr. Olamide Orekunrin, who founded Flying Doctors Nigeria following the sudden death of her 12-year-old sister from sickle cell disease. 

    According to a report by CNN, Orekunrin's sister was visiting with family in Nigeria when she got sick, and there weren't any nearby hospitals that could handle her illness. The closest equipped hospital was in South Africa, so Orekunrin and her family scrambled to locate an air ambulance that could transfer her sister to that facility. Unfortunately, by the time the air ambulance was ready to take off -- 12 hours later -- Orekunrin's sister had already passed.

    To ensure that no other family would have to endure such a lack of appropriate hospital access, Orekunrin decided to start an air ambulance service, herself. Headquartered at the International Airport in Lagos, Nigeria, Flying Doctors Nigeria is the first and only air ambulance service in West Africa. Run by a physician-led team, FDN brings decades of combined experience on every call, and not only are their services available 24/7, but they also have the shortest response time of just 20-30 minutes. Read more about what they do here.

    Had you heard about Dr. Olamide Orekunrin and Flying Doctors Nigeria before now? Do you know of any other extraordinary warriors, advocates, and/or healthcare givers we should all recognize? Share in the comments below!

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