‘I get annoyed when people say that Sickle Cell ‘SC’ is mild’
I was born in Vancouver, British Colombia and am a visual artist, published author and poet. When I was a baby I cried a lot in pain and the doctors could not explain why. They even accused my mother of abuse! At the age of 7 my mother took me to the hospital and a young intern thought it would be wise to check for Sickle Cell Disease. As it turned out I had Sickle Cell Hemoglobin ‘SC’ disease. The doctors kept telling us that Sickle Cell ‘SC’ was a milder form of Sickle Cell even though I was in and out of hospitals all my life. I had my gallbladder removed at age 13. In my 20s I was diagnosed with WPW (Wolff Parkinsons White Syndrome; an electrical heart issue) and had a heart procedure done.
I started getting acute chest syndrome which I foolishly treated at home thinking it was not important because I was told I had a ‘milder form of Sickle Cell’. Only to realize later on that it could have been lethal. In my 30s I was diagnosed with asthma after a severe cold which triggered more acute chest syndrome. I was also diagnosed with Ulcerative Colitis probably due to all the anti-inflammatory drugs I had to take for the Sickle Cell pain crisis over the years.
In 2015, I almost died. I went to the hospital for a Sickle Cell crisis. I had pain in my left shoulder blade and arm. I got pneumonia from too much IV fluid and this lead to acute chest syndrome. They transfused me and my body rejected the transfusion and I went into hyper haemolysis which can be deadly. They sent me to the ICU. I have an amazing haematologist named Dr. Hatoon Ezzat and she was able to bring me back from the brink of death which I will always be grateful. I was in hospital for about three months, plus another four months of recovery at home.
Then, I was put on hydroxyurea which caused some complications until we got the dosage right. I am getting older now and the days without pain are getting fewer and fewer like the sand in an hourglass; the demands put on me are getting more and more taxing; and the patience and understanding from people are getting less and less.
I get annoyed when people say that Sickle Cell ‘SC’ is mild. This myth can be lethal as it gives patients and healthcare providers a false sense that they don’t have to be as vigilant with their treatment of Sickle Cell ‘SC’.
The cycle of exhaustion, pain, hospitalizations, and hospital recovery has made it hard to hold full-time employment. I went from job to job. But Sickle Cell patients do what we can to work and survive like anyone else. We work hard and are not lazy ‘drug seekers’. We struggle with the increasing costs of living like anyone else in addition to complications and unpredictability of SCD, the struggle with isolation and loneliness, abandonment of some friends or family too scared to maintain contact, discrimination and neglect from some emergency room staff and doctors, the humiliation of loss of employment or education due to too many sick days, and the fear of a short and painful life.
In 2014, I co-founded the Sickle Cell Association of BC (SCBC) with three other women affected by Sickle Cell: Adobie McAllister, Beverly Ndukwu and Thelma Mcdonald (my mother). Our group aims to better the life of individuals living with SCD. It is our hope to one day see SCD patients get group extended health care with extra prescription coverage; day clinics for those that wish to be treated at home; food delivery when in hospital or at home; home visits or mentorship programs with other Sickle Cell patients.