Have Sickle Cell Disease? You Don't Have to Go It Alone

Mentors can help guide young sickle cell disease patients.

Sickle cell mentors for young people
Stock photo for illustrative purposes only

Tahirah Austin has a message for young people living with the genetic blood disorder Sickle Cell Disease: You are not alone.

Austin, who was diagnosed with Sickle Cell Disease at age 6, says it is important for young patients to find a mentor – an older person with the disorder who can help guide them in what to expect as they make the transition to adult care.

“There’s no way you can do this by yourself,” she said during a recent episode of the “World of Promise” podcast. “You need someone to guide you and to have someone who has done it.”

Once you have a mentor, it’s even OK to ask that person to come with you to your first doctor’s appointment as an adult, Austin said. In addition to being a comforting presence, the mentor’s own experiences can help guide you to ask important questions at the appointment and to serve as a listening ear.

“There are things that you may share with someone who has Sickle Cell Disease, who may be a few years older than you, that you won’t share with your parents or with your family,” Austin said.

Click below to hear Austin’s full “World of Promise” conversation with CSL’s Chief Communications Officer Anthony Farina.

 

June 19 is World Sickle Cell Day. In honor of this day and the more than four million people around the world living with this genetic blood disorder, podcast host Anthony Farina sat down with a person living with Sickle Cell Disease to talk about the challenges she faces, and has faced, as a person with the condition.