Life of a Sickler RSS



#BraxtonStrong

  Braxton Watson It’s torture.  To know that I grew, nurtured, and protected her in my womb only to birth her and not have the power to take her pain away is a weight that I bear daily.  I promised her, long before I knew she’d be sent to me, that I’d never let anything hurt her. It was a promise I could not keep. The constant touch she needs just to feel a little more at ease, the long days and nights spent nursing and looking into her eyes filled with despair, the worry and anguish of not knowing what’s wrong, knowing she just wants mommy close and to feel okay.  I’m not sure why God chose us, but...

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You have sickle cell. Is the 9-5 life really for you?

Yes, you can make it — with help.  Work life balance is so complicated for us. We have to have money to survive in this world. We have to have insurance, we have to have access to affordable medical care. We have to have space for our mental health and life goals to be met. We need a social life with friends who understand. We need our families to stand by our sides. It’s all a complicated ball of mess that only my faith in God has helped me overcome. I want to encourage you - yes you can make it- with help.  My problem, like most of us after the transition from pediatric to adult life, is that I...

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Laughing Through the Pain

Belefia Parks They say having the disease isn’t a death sentence but living with it almost seem like death is around the corner though. I haven’t always dealt with Sickle Cell complications. I don’t recall having crisis as a child; it wasn’t until I got older that SC began to played a major part in my life. At one point it seem to had been making up for lost time. I went from feeling like I was being deprived of living, discourage to talk about Sickle Cell, realizing how blessed  I was and laughing through the pain. My first memories of how serious this thing was came when I entered high school. I was just a typical teenage male, desiring...

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My journey with Sickle Cell

 Alexis Jarrett The doctors never told my mother that by she and my father having Sickle Cell trait, they were at risk of me having Sickle Cell. It turns out her doctor knew this information and withheld it from her when 6 weeks after my PICU test, I was diagnosed with SS. She kindly threatened to sue them, and they responded by giving her all of her money back to pay for her hospital visits.  My mom and I consistently had to fight the system, and always be one step ahead when it came to my medical care. My mom being a single mother until I was like 4 did the best she could with raising me & getting information. ...

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2017 U.S. Sickle Cell Advocate of the year

  Well​ ​known​ ​for​ ​her​ ​advocacy​ ​and​ ​a​ ​heart​ ​touching​ ​​story​​ ​that​ ​inspires​ ​her​ ​drive,​ ​meet​ ​LaKisha Johnson.   LaKisha​ ​is​ ​the​ ​Executive​ ​Director​ ​of​ ​Sickle​ ​Cell​ ​Support​ ​Services​ ​(SCSS)​ ​in​ ​Little​ ​Rock,​ ​Arkansas. SCSS​ ​is​ ​an​ ​organization​ ​she​ ​co-founded​ ​with​ ​her​ ​late​ ​husband​ ​Germaine​ ​Johnson​ ​Sr.​ ​in​ ​2004.​ ​Over the​ ​course​ ​of​ ​the​ ​last​ ​thirteen​ ​years​ ​she​ ​has​ ​help​ ​to​ ​create​ ​avenues​ ​that​ ​substantially​ ​increased resources​ ​and​ ​the​ ​quality​ ​of​ ​care​ ​for​ ​Sickle​ ​Cell​ ​patients​ ​all​ ​over​ ​Arkansas.  It​ ​goes​ ​without​ ​saying​ ​that​ ​undeniable​ ​changes​ ​have​ ​been​ ​made​ ​in​ ​the​ ​Sickle​ ​Cell​ ​community​ ​thanks to​ ​LaKisha​ ​and​ ​the​ ​ACSS’s​ ​many​ ​efforts.​ ​SCSS​ ​provides​ ​a​ ​plethora​ ​of​ ​services:​ ​family​ ​grants, financial​ ​services, providing​ ​hospital​ ​care​ ​kits,​ ​transportation​ ​to​ ​clinic​ ​visits​ ​along​ ​with​ ​hospital admissions​ ​and​ ​discharges​ ​are​ just...

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