Dominique Friend doesn't look like she's sick. But the Lansdowne resident often deals with bouts of pain so severe she ends up in the hospital for weeks.
Friend, 44, was born with sickle cell disease, an inherited blood disorder that affects an estimated 90,000 to 100,000 in the U.S., according to Centers for Disease Control and Prevention information.
Her autobiography "Sickle" was released by Tate Publishing on Dec. 9 in a second edition, after she self-published the book in 2009.
In the book, she tells of her struggle with the debilitating disease. Friend said she shared her personal account to raise awareness about the disease, which predominantly affects African-Americans. It is also found in those of Hispanic and Mediterranean descent, according to CDC information.
Friend said for as long as she can recall, she has dealt with painful episodes that are characteristic of sickle cell disease.
Pain develops when sickle-shaped red blood cells, that should be round like a doughnut, block the blood flow to the chest, joints and other parts of the body, Friend explained. It can last for a few hours to a few weeks and such episodes are called "crises," she said.
"I would take the pain of childbirth over a sickle cell crisis any day," said Friend, who has three children, two stepdaughters and two granddaughters.
She has been married to Michael Friend for 18 years.
The painful disease can disrupt learning for children and make it difficult for adults to work, said Dr. Sophie Lanzkron, an assistant professor of medicine and oncology at Johns Hopkins University School of Medicine.
A bone marrow transplant or stem cell transplant is the only cure, according to the CDC website.
Friend said she began to write the book in 2009, after a flare up that caused her to go on medical disability and leave her job as an executive assistant at Rite Aid Corporation in Pennsylvania in 2007.
"I want people to know that no matter what blows life deals, you can overcome," Friend said.
She established the Sickle International Family Coalition, a nonprofit organization that seeks to improve education and awareness about the disease. She has also spoken at numerous conferences and events nationally, and has been invited to the White House to speak about the disorder.
Friend wants to see more awareness of the disease among the medical community about the disease, she said.
"I really believe there aren't enough doctors that understand this disease to take care of sickle cell adults like they need to," Friend said. "It's almost like living in a third world country as an adult living with sickle cell. What I mean by that is, nobody wants to see a baby in pain...so therefore children get whatever they need."
Lanzkron, who wrote the preface to Friend's book, said she established the Sickle Cell Center for Adults at The Johns Hopkins Hospital to "address the needs of adults with sickle cell disease, because I heard the same story over and over again about how patients would go into emergency rooms and not get the treatment they should be getting."
Patients require very strong pain medications during the bouts of pain and because they don't show visible signs of pain they are under treated, Lanzkron said.
Lanzkron said she has heard from patients all over the world that, "if they show up in the emergency room they get treated like a drug addict."
In order to prevent such situations, Friend said she is working with the Joint Commission, a nonprofit that accredits and certifies more than 20,500 health care programs and organizations in the U.S., to establish a universal protocol for sickle cell disease patients.
"I believe this book is going to encourage people to look past what they see or past what they feel," Friend said. "All of us know someone who needs to be inspired and encouraged, and that's what "Sickle" does."