Google
Trusted Resources: Community Center
Online groups, photo galleries and blogs
Today’s Faces of Sickle Cell Disease: Adrienne Shapiro
Adrienne Shapiro is a patient advocate, co-founder of the Axis Advocacy SCD. Like the three previous generations of mothers in her family, Shapiro gave birth to a child born with sickle cell disease. Yet the news came as a complete surprise – not because she was unaware of her family history, but because she had received a false negative result from her sickle cell disease/trait test. It wasn’t until her daughter Marissa was six months old, and her family got word of her diagnosis in a letter from the California New Born Screening Program, that she knew. “It was shocking to receive the diagnosis in the mail. We did not believe it at first.”
The confirmation marked a turning point in Shapiro’s life. She now had a single goal – keeping her daughter Marissa alive until science found a cure. She became a patient advocate and co-founded the Axis Advocacy SCD patient education and support website.
+myBinderRelated Content
-
James F. Casella, MDDr. James Casella is a professor of pedi...
-
Comparison of the Safety Profile of Sickle Cell Disease Patients Treated with Hydroxycarbamide in Off-Label Versus i...ESCORT-HU (European Sickle Cell Disease ...
-
Orphan Drug Designation Granted for CSL Behring’s Investigational Plasma-Derived Hemopexin Therapy for Sickle ...Global biotherapeutics leader CSL Behrin...
-
Eileen Hansbury, MSEileen Hansbury is a Physician Assistant...
-
Hydroxycarbamide treatment and brain MRI/MRA findings in children with sickle cell anaemiaSilent cerebral infarction (SCI) is the ...
-
2019 Tackle Sickle Cell Casino NightTwin brothers and New England Patriots s...
-
New Jersey may start a confidential sickle cell trait registryThe New Jersey Legislature is considerin...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.
