Father calls sickle cell anemia 'neglected' disease

Sickle cell anemia is the most common genetic disease in the world, but Canada has few specialized centres to treat adults.

The debilitating disease mainly affects people of African descent. Sickle cell anemia causes malformed red blood cells that block tiny blood vessels.

Oxygen flow to tissues is reduced, producing episodes of acute pain, as well as complications including blindness and heart, kidney and liver failure.

"Before the advent of new treatment options, a lot of patients died during their childhood," said hematologist Dr. Denis Soulires of Universit de Montral.

Pediatric patients often have a procedure called erythropheresis, an exchange of red blood cells to keep the disease under control.

Every four to six weeks, Melissa Maurice Carrenard, 21, has the procedure. When she left the children's hospital that specialized in her condition, general practitioners took over her care.

Carrenard felt okay, but the disease affected her liver and she needed a transplant. Soulires said specialized care may have prevented the blockage of her bile ducts.

The blockage "probably have could been reversed before and possibly could have saved her liver, but I'm not able to say for sure," Soulires said.

Wilson Sanon's 11-year-old daughter has sickle cell anemia. Sanon said he's sending a cry of alarm for what he calls a neglected disease.

No one knows how many people are affected by sickle cell anemia, because Health Canada doesn't keep any statistics on the disease.

Sanon has been asking the Quebec government to fund specialized adult treatment centres. They haven't replied.

Carrenard said she wishes more doctors were available who know how and when to administer the drugs and technologies that could keep her as strong as possible.