Q&A with Lynnie Reid

Lynnie Reid went from being a young mother who knew nothing about sickle cell disease to becoming a passionate champion for people affected by the blood disorder.

September 17, 2012

As the parent of two children with sickle cell disease, Lynnie Reid has spent decades dealing with medical systems. She has struggled with gaps and inconsistencies in care, particularly dangerous for those with the genetic blood disorder.

Sickle cell disease affects as many as 100,000 people in the US and is the genetic disease most commonly detected in routine newborn screening testing that is done on all babies born in the US. Yet, it has been historically overlooked and misunderstood. Those with the disease can experience episodes of intense pain, damage to organs, infections and early death. As Reid encountered challenge after challenge while trying to secure care for her children, she became an impassioned advocate for bettering health systems

She sat down with NICHQ’s marketing and communications team to talk about her experiences.

Can you tell us a bit about your background and experience raising two children with sickle cell disease?

I grew up in Roxbury, MA, in an old family home. I married a man I fell instantly in love with; we got married when I was 18. We have five children: Damali (35), Menelik (33), Omar (30), Amiel (18) and Isaiah (13). Damali and Amiel both have sickle cell disease.

I had Damali when I was 19. It was the summer and she seemed really lethargic so I thought maybe it was heat exhaustion. She was nursing fine. I called the nurse and she suggested I bring in Damali right away. Her eyes had a little yellowish tint. It was really scary. The nurse couldn’t figure out what it was. We ended up in the ER and she wasn’t getting better. She was just crying and crying like something wasn’t right, so they admitted her to the hospital.

We were there for almost a month. My husband and I got tested for all kinds of things and Damali got tested and finally the geneticist told us that she has sickle cell disease. He described for us what it was and showed us what the cells would look like under a microscope. He told us that Damali would not live past the age of 18.

Did you know anything about sickle cell disease at that point?

I had never even heard of it. I was in my second year of junior college when I had Damali and I had had basic biology so I knew a little about genetics. When the doctor said “inherited” I knew what that meant, and I explained to my husband.

When Amiel was born 17 years later, I knew right away that he had sickle cell disease because of newborn screening. He never had the ongoing pain that Damali has, so even as individuals with the same parents they present the disease very differently. Sickle cell disease is funny that way. Amiel had acute chest syndrome—where sickle cell disease causes damage and inflammation in the lungs—several times when he was young and was in the ICU for months. We thought he was going to die. When he was in second grade he started taking a new medication called hydroxyurea. He hasn’t been hospitalized or had a pain crisis since.

Now, Amiel has started undergraduate studies in engineering and plays the cello and piano while working at a research lab at Boston Children’s Hospital. Damali has been too sick to work outside of the home, but is writing a book about living with sickle cell disease. She has been diagnosed with end-stage renal failure and goes for dialysis three times a week. But now she’s figured out how to not let dialysis rule her life.

How has your background as patient advocate affected your role as a mother of kids with sickle cell disease?

I think my background in healthcare has saved my kids’ lives many times and that’s wrong. I shouldn’t have to know all of this and advocate so much to have my kids treated correctly. That’s one of the things we’re trying to fix in the system. My children have had the opportunity to have relationships with clinicians who have helped them get the care they’ve needed. This is the most critical thing for a person living with sickle cell – relationships built on trust, transparency, and a mutual sense of respect. This should develop into providers knowing the patient very well. And the system needs to support this.