Fighting Sickle Cell Disease is a Family Affair

“I am the fourth generation mother in my family to have a child with sickle cell disease.”

Adrienne Shapiro knows firsthand what thousands of American families dealing with sickle cell disease (SCD) go through every day. SCD mutates the body’s red blood cells, leading to agonizing pain. For its victims and their families, it means a lifetime of visits to the emergency room, and likely early death.

Four generations of Adrienne’s family have been ravaged by the devastating illness, taking the lives of too many relatives. But the hardest burden was when Adrienne learned her daughter also had sickle cell disease.

“My daughter Marissa was born with SCD. It was a great surprise to us because I’d been tested and had a false negative. And from the beginning we were told, this is good, she’s doing well, but I don’t know about next year. The average person with SCD only lives to be about 40 in the US.”

But watching the ones she loves in crippling pain has strengthened Adrienne’s resolve to fight.

Using these deeply personal and painful experiences, Adrienne has dedicated her life to improving the care of people living with the disease and in supporting those searching for a cure. That’s how she came to be a patient advocate for Americans for Cures.

“Nobody just wakes up one morning and says, ‘I’m going to be an advocate,’ at least not me. Most of us have come to this journey as mothers or fathers, wives, daughters, loved ones. We start very selfishly. I wanted my daughter to outlive me.”

Then the passage of Proposition 71, California’s $3 billion stem cell research initiative in 2004, gave her new hope—through the possibility of better treatments—or even cures—for devastating illnesses such as SCD, through stem cells.

“We were advocates who were raising money with bake sales and galas, but there was no way that we could raise enough money to do the kind of research that was needed. Because good science costs a lot of money. So with the passage of California’s Prop 71, there was funding. And what came with this funding was that we could have clinical trials. You had to have patients for those clinical trials, and those of us who were advocates said yes, here we are and here are our people, let us know what we can do to help.”

Thanks to the work supported by Proposition 71, a Phase 1 human clinical trial is testing a revolutionary new treatment for sickle cell disease to see if it safe for use in patients. This new treatment involves modifying adult stem cells to stop the mutation caused by sickle cell disease, paving the way for improved patient treatment, and, perhaps, one day even a cure altogether.

Now, advocacy on behalf of her daughter is a family affair, with Adrienne’s husband Ron and her other daughter joining in. And that makes sense for Adrienne, because the stakes are personal.

“Right now, my child suffers, I suffer. But stem cell research is going to save lives now, and it’s going to save lives in the future. You just think about that for a minute. Say it out loud. ‘The work we do is going to save lives, now and in the future.’ Don’t you forget that.”

And as she looks ahead, Adrienne is clear what she’s fighting for.

“I believe that a cure for all people with SCD is possible in our lifetime. That’s why I’m here, that’s why I’m fighting.”

 

Watch Adrienne on why she’s involved: