Living with sickle cell disease can take a toll that goes far beyond pain. Check out what HRSAgov is doing to help inform patients of treatments so they become active participants in their care:
I have lived with sickle cell disease for 48 years. The toll it takes goes far beyond pain – it has impacted me emotionally, economically, and psychosocially. I missed childhood activities because I was too sick or tired. I missed school days and worked harder to catch up on missed assignments. I learned to live with sickle cell disease, but it still impacted my ambitions.
After starting on hydroxyurea, I went from having four or five crises a year to not having a crisis for years. I went from just getting by to making the Dean’s List every semester in my last two years of college. I became the first in my family to graduate from a four-year university, and I did it with a double major in Zoology and Microbiology.
Now, at the Health Resources and Services Administration’s Sickle Cell Disease Treatment Demonstration Program , I work with talented people to address the barriers that keep people with sickle cell disease from receiving treatments. Project ECHO, a program that uses telementoring to connect local clinicians to experts from sickle cell centers, and allows hematologists to share knowledge with primary care providers, increases awareness for the effectiveness of giving hydroxyurea to patients. HRSA currently funds five regional Project ECHO grantees to develop regional and state networks.
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