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Tosin Ola, BSN, RN knows firsthand the challenges of living with sickle-cell disease. The practicing registered nurse, and mother of twin toddlers, launched the Sickle Cell Blog in 2007 to bond with others and share her experience living with this debilitating and deadly disease.

A short two years later, the sickle-cell advocate created an online platform – the Sickle Cell Warriors website – to broaden the discussion and give the community a much-needed voice. The educational site is designed to raise awareness of this complex chronic medical condition, address the serious complications of the disease, provide expert advice and research news, promote local events and much more. Also, the portal highlights “Warriors in the Spotlight” – people living with sickle-cell disease who share their personal experiences and are a source of inspiration for others.

To complement those efforts, Tosin’s Sickle Cell Warriors Facebook Page supports and encourages members to engage with others going through the same daily struggles. The leading social media channel has connected almost 17,800 members, making it the largest online group of people affected by this disease.

Tosin has partnered with Mast Therapeutics as a Corporate Liaison to lend her expertise, provide valuable insight and counsel the company from the disease patient and advocacy perspective. With an Associate’s Degree in Nursing (Oakwood University) and a Bachelor’s Degree in Nursing (University of Phoenix), she is working on her Master’s Degree in Nursing and Business Administration with an emphasis in Healthcare Management. She serves as an authoritative speaker, and reliable source to both media and book authors. Tosin lives in Carlsbad, California with her toddler twins and husband.

Summer fun means playing outdoors, cooling off in a refreshing pool and jumping on a plane to enjoy a family vacations. But for children, teens and adults living with sickle cell disease, these activities can trigger an extremely painful “crisis” episode.

“Crisis” is severely debilitating pain: sharp, intense, stabbing, throbbing, and more uncomfortable than post-surgical pain or even childbirth!  Worse, “crisis” can occur at any moment without warning.

Summer “crisis” triggers include:

* dehydration

* cold pool water

* extreme hot weather

* extreme cold air conditioning

* vacation air travel (e.g. high altitude)

* strenuous outdoor sports without frequent breaks to rest and hydrate

 

Tosin Ola answers your sickle-cell questions on the next page. 

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