Sickle cell fight is in Dot family's blood

During their trip to Washington, D.C., to take part in the recent fourth annual Family Advocacy Day, the Reid family took in some of the sights in our nation’s capital. Two of Lynnie and Andrew Reid’s five children — 31-year-old Damali and 14-year-old Amiel — were diagnosed with sickle cell disease at birth. (Photo courtesy of Children’s Hospital Boston)

Stephanie Ganias

Sickle cell disease affects millions of people all over the world, including about one in 375 African American infants in the United States, according to the U.S. Department of Health & Human Services.

But despite the disease’s wide-ranging impact, relatively few people are aware of its debilitating affect on those who have it.

Dorchester residents Lynnie and Andrew Reid want to change all of that. They have five children, two of whom — daughter Damali, 31, and son Amiel, 14 — were diagnosed with sickle cell disease at birth.

As proactive parents, the Reids are constantly trying to educate others about the disease and advocating for advances in sickle cell screening and treatment. They have worked with lawmakers to raise public awareness, initiated several treatment protocols at Children’s Hospital Boston, hosted sickle cell scholarship events and joined the state Department of Public Health’s Newborn Screening Advisory Committee.

The Reids’ commitment to educating themselves and others started when their older son, Menelik, started to suffer from chronic asthma as a young boy.

“Once we learned our older son had chronic asthma, we were trying to understand the medicines he was on and we really tried to figure out how to let him have a high-quality life,” said Mrs. Reid, 50. “As parents, we are active about our children’s [conditions] and we try to get our kids to be like that, too …”

That encouragement is likely why both Damali, who lives in South Boston, and Amiel, who will enter Belmont High School in the fall through the METCO program, are as involved as they are in sickle cell affairs. It’s also why events like the recent Family Advocacy Day — where families and patients from across the country gather to advocate on behalf of their children’s hospitals — have become such a big part of their lives.

Held last month in Washington, D.C., participants in the fourth annual event called on congressional lawmakers “to raise money for research, raise money for continuing education for doctors so that more doctors will go into pediatrics, and to raise money for health care for children,” according to Mrs. Reid, who called the trip “a personal thing that we did as a family.”

One area requiring more attention, according to Mrs. Reid, is the quality of life for sickle cell patients.

The disease primarily affects people of African descent and Caribbean heritage, but the trait has also been found in a number of other ethnic backgrounds. About 8 percent of African Americans have the sickle cell trait, according to federal statistics.

Named after the abnormal shape of usually round red blood cells, sickle cell disease is a blood disorder that restricts the flow of blood to vital organs and causes excruciating pain throughout the body. In some case, those vital organs are damaged as a result.

Some potentially helpful provisions are in place — employees suffering from sickle cell disease may be protected from workplace discrimination under the Americans With Disabilities Act of 1990, and sickle cell disease is recognized as an “other health impairment” under the Individuals with Disabilities Education Act, so afflicted students may be eligible for special educational services and allowances. But laws are not always enforced or understood, and Mrs. Reid said that in her experience, workers and students with sickle cell disease often do not get the full benefits to which they may be entitled.