Community stories archive

Explore reporting, meetings, people, education, community stories and resources from the original OneSCDvoice website.

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118 pages in Community stories

Community storiesDecember 18, 2017
New treatment plan leads to better pain control for acute sickle cell crisis
TREATMENTS · Community Interviews · Complications/Clinical Manifestations · Disease Management · Sickle Cell Crisis · Vaso-occlusive Crisis/Pain Crisis
Community storiesDecember 18, 2017
What it's like to be 17 and living with sickle cell disease
Patient Stories · Blood Transfusion · Disease Management · Nonpharmacologic Therapy
Community storiesDecember 18, 2017
You'd Probably Never Know This Woman's Had a Debilitating Disease Since Birth
Patient Stories · QUALITY OF LIFE · Coping · Feelings and Experiences · Living with SCD/Quality of Life
Community storiesNovember 17, 2017
‘Every Time It’s A Battle’: In Excruciating Pain, Sickle Cell Patients Are Shunted Aside
Patient Stories · QUALITY OF LIFE · Emergency Departments/Hospitalizations · Feelings and Experiences · HealthCare Issues/Services · Healthcare/Research · Living with SCD/Quality of Life · mistrust · Psychosocial · Racism · Stigma
Community storiesNovember 17, 2017
Kyriako Damavoletes Talks About the Stigma of Sickle Cell Disease
Patient Stories · QUALITY OF LIFE · Discrimination · Feelings and Experiences · Living with SCD/Quality of Life · Stigma
Community storiesNovember 17, 2017
My Story: “Any Day Without Pain Is a Good Day!”
Patient Stories · QUALITY OF LIFE · Feelings and Experiences · Living with SCD/Quality of Life · Pain
Community storiesNovember 17, 2017
Pioneering a New Therapy for Sickle Cell Disease
TREATMENTS · Community Interviews · Clinical Trials · Disease Management · Investigational Therapy/Future Therapy
Community storiesNovember 17, 2017
Sickle Strong Initiative – Dr. Marie Ojiambo
Patient Stories · disease awareness/support · patient advocacy · Resources/Patient Support
Community storiesNovember 7, 2017
Sickle Cell Patients Endure Discrimination, Poor Care And Shortened Lives
Patient Stories · Caregiver · Discrimination · Feelings and Experiences · Grief · HealthCare Issues/Services · Healthcare/Research · Inadequate/Inappropriate Services · Life Expectancy · Living with SCD/Quality of Life
Community storiesNovember 3, 2017
Marie Ojiambo: Beauty, brains and a warrior’s heart
Community Interviews
Community storiesAugust 30, 2017
CAMEROON: Let’s Talk about Sickle Cell Disease
Patient Stories · Coping · Living with SCD/Quality of Life
Community storiesAugust 30, 2017
Crux of the matter with Elsie: Sexual Disposition of Sickle Cell Warriors
Community Interviews · Lifestyle · Living with SCD/Quality of Life · Sexual Health