Imagine you wake up one morning with a full schedule. A few meetings at work, your daughter's basketball game, several household chores. Before you even get out the door, you start to feel it: a dull ache in your back that increases in intensity by the minute and starts spreading to your joints. You know what it is. You are in a life-threatening Sickle Cell Disease vaso-occlusive crisis.

As the pain grows, so does the panic because all you have at home to help you is some NSAIDs. The condition warrants a trip to the Emergency Room, but the thought of going there is as frightening as the condition itself. The physicians and nurses at the hospital do not have sufficient knowledge of how to diagnose and treat you. And they may not even believe that you need treatment. They may assume you are merely seeking drugs, adding insult to injury. And there's a good chance that you will be sent home, still in danger, with no treatment. It happens to you a few times a year.

Why?

The reasons are rooted in the challenges Sickle Cell patients have faced since the first SCD patient was diagnosed in the US on 1910. Although Sickle Cell Disease is the most prevalent rare disease in the US, physicians and nurses receive very little training in diagnosing and treating it. Historically, the SCD patient population has faced significant other hurdles as well. Racial bias, deeply embedded in the healthcare system, has denied African-Americans access to high quality medical care or even adequate pain relief. The assumption that people of color complaining of agonizing pain are merely drug seekers has plagued this community for generations, and is now intensified in the wake of the opioid crisis.

But you can help. Your support of Pathways To Trust's Raise the Bar for Sickle Cell Disease can give these patients access to appropriate care.

Your support will help Pathways To Trust deliver programs that

Educate all levels of healthcare providers: physicians, nurses, physician assistants, nurse practitioners, social workers about Sickle Cell Disease and its treatments
Share the personal stories of SCD patient advocates and their experiences with the healthcare system

Your donation today will support the development and delivery of 5 SCD physician and nurse educational events in the New York/New Jersey area.

Raise the Bar for Sickle Cell Disease

By Pathways To Trust

Raise the Bar for Sickle Cell Disease