Rae Blaylark
Rae is the mother of a young adult living with Sickle Cell Disease (SCD). Her son, now 23 years old, was diagnosed at two weeks of age through newborn screening in Minnesota, where they live. As a single, first-time parent, Rae had the difficult job of juggling both the day-to-day challenges of motherhood with the added complexity of parenting a child with SCD. She credits her strong family with helping her on this journey, but the experience was new to all of them.
Rae took this responsibility and her role very seriously, but she acknowledges that there was a steep learning curve for both her and her son. Over the years, he learned from her and she learned from him. In fact, she says in many ways she learned as much from her son as she did from his doctors.
Part of Rae’s learning experience has been learning to see beyond her own immediate situation. “I wanted to be able to be a part of conversations that could in fact shape the future of how SCD is treated in a clinical setting, emergency setting, and in the medical community’s overall understanding,” she said. It is that sentiment, and her personal experience, that led her to participate in the development of new ASH Clinical Practice Guidelines on SCD.