Toronto-Approximately 5,000 Canadians suffer from a disease that can make them extremely painful and paralyzed at the time of an attack, which can be fatal if left untreated. But for many patients who seek medical help during the crisis, they face racial discrimination and discrimination, leading to poor health care and potentially fatal consequences.

These patients have Sickle cell anemia, A genetic disease that is more common in certain ethnic groups, including African, Arab, and Indian descent. As a result, experts say that many patients suffer from racism and are often denied proper or adequate care.

Valissa Providence, a 30-year-old mother who lives in Edmonton, Alta, is attacked several times a month.

“Usually, it’s in my joints… it feels like someone stabbed my muscles with a very sharp knife, sometimes even pierced my bones, or started out from the inside of my bones, She told CTV News, describing a kind of “really paralyzing” arterial pulsation.

In most cases, she can judge that an attack is about to happen.

“I can feel [it] Go in that direction. It’s almost like pain… It still hurts even when you lie down. Therefore, it doesn’t matter what I do, it will only get worse and it will be very painful. I must seek medical attention immediately to control it. “

But traveling to the emergency room often means not only fighting physical pain, but also convincing medical staff that her pain crisis is real. Providence said that hospital staff often treated her as a drug addict to ease her pain. Even the special health card of the Canadian Hemoglobinopathy Association she carried, which listed her diagnosis, treatment and medication requirements, and her doctor’s contact information, did not protect her from discrimination.

“A doctor, I told him,’This is my card,’ give it to him, and he even refused to see it,” she said.

“They don’t believe that I have this disease, they don’t believe that I am suffering. They believe…I am a drug addict, and they don’t want to give me the medications prescribed and needed by sickle cell patients.”

Providence said that she has had more than 10 hospital visits, but the medical staff did not listen to her and did not provide her with the medicines she needed.

“Scared me. Like, who else can I run?” Providence said.

“As soon as I walked in, maybe I was wearing sweatpants, or you know a hoodie, which is very comfortable. Maybe to them, I don’t look sick, so they just unconsciously think, okay, okay , She is looking for drugs. I don’t think if I were in another match, I would not get the same treatment.”

Sickle cell disease is part of a group of inherited red blood cell diseases that cause sudden and severe pain, according to Sickle Cell Awareness Group of Ontario.

“The World Health Organization (WHO) estimates that this disease affects nearly 100 million people worldwide. More than 300,000 children suffer from this disease each year, and many children die in childhood. Unless treatment is available, those who live to adulthood People usually face chronic disability and premature death.

“I put my life and health in your hands”

The disregard that some patients face even leads them to avoid medical help at all.

Toronto resident Serena Thompson told CTV News that because of the poor treatment she received there last time, she avoided specific hospitals.

“Being treated as a criminal, a tramp or—I can’t even explain it,” said Thompson, an advocate and chairman of the Ontario Sickle Cell Association.

“We are afraid that we have to explain the part of ourselves, we are afraid that we have to prove that we are in crisis.”

Hematology expert Dr. Madeleine Verhofsek explained that people with this disease may look good on the surface, but “are experiencing terrible pain.”

“They said,’I’m here, I have sickle cell pain, I need morphine, or I need hydromorphone or other opioid treatment,’ they are looking for, they are receiving problems, they are experiencing delays in treating them They feel as if no one hears their voice or receives the treatment they need in these situations.”

But for patients with this disease, avoiding medical care is risky. These pain episodes are signs of tissue hypoxia caused by the disease.

According to the Ontario sickle cell disease clinical manual, normal oxygen-carrying red blood cells are shaped like a disc, but the cells of a person with this disease can be sickle-like. They can stick together, cause blockages, and cause hypoxia in body tissues, which can lead to pain and even organ damage.

Pain can occur in any part of the body, occur suddenly, and last from several hours to several days. Complications that may occur include acute stroke, aplastic crisis (severe anemia), priapism (painful erections that last a long time), infection, and myocardial ischemia (when blood flow to the heart decreases, preventing enough Oxygen enters the heart muscle).

“It can grow into something bigger, including very serious complications such as stroke, or lung blockage, called acute chest syndrome, or other blockage of other vital organs,” hematologist at St. Joseph Health Care Verhovsek said. Assistant professor at Hamilton and McMaster University.

“If their medical problems are not dealt with in time, things will quickly become very serious.”

This is why doctors and advocates are calling for the development of national standards of care, treat the sickle cell crisis as a medical emergency, and ensure that patients receive fast and fair treatment without discrimination.

“It’s a bit scary, because my biggest fear in growing up, even now, it’s a stroke because of this disease, because that might mean I’m different, I can’t use one side of my body, I can die, “Providence said.

Verhovsek said patients should be able to receive treatment within 30 minutes of meeting with the triage team or within 1 hour of arriving at the emergency department.

“One of the most important things we want to see is that patients receive pain management as soon as possible,” she said.

Thompson said this is what the Ontario Sickle Cell Association also wants.

“We do hope to see doctors realize that the protocol in the ER will help guide how to treat [a] Sickle cell crisis,” she said.

There is some progress. In December 2017, Ontario issued a sickle cell crisis clinical manual through the Provincial Maternal and Child Health Commission and the Department of Health and Long-Term Care. In November last year, the New Democratic Party proposed a new bill called “Improving Access to Health Care Act” “Legislation establishes a general agreement to ensure that Ontario people with sickle cell disease are provided with a high standard of care.

At the same time, experts say that doctors should receive better education so that all patients can get the care they need.

“These are usually black or [other] Racialized individuals, we know without a doubt that, unfortunately, we have a systemic racism problem in Canada,” Verhovsek said.

Providence said that the black nurse had spoken for her, saying “this is not right”, which proves that others noticed that she was not getting the care she needed, or that she was not taken seriously because she was black.

Providence said: “If I come to the hospital and take my life and health in your hands, I don’t need you to make judgments just because of my skin color.”

“I am a disabled person and sick. I need the same treatment and respect as everyone else.”

File from CTVNews.ca writer Alexandra May Jones