Wednesday 24 April, 2019

Sickle cell anaemia patient: Don’t judge a book by its cover

After losing her brother and sister to this incurable disease, living life with full-blown sickle cell anaemia has made waking up every morning a scary and uncertain reality for this 31-year-old woman.

Terri-Ann Philip hails from the quiet community of La Lune Village, Moruga, and was born with sickle cell disease after both her parents carried a trait of the illness. Her eldest sibling, Pernell, was lucky, he was only born with the trait. However, her brother, Terrance, died in 2017 due to congestive cardiac failure as a result of the disease while her sister, Annalisa, died in 2004 at age 6 from pneumonia caused by sickle cell anaemia.

“It constantly on my mind, it’s something I’m always stressing about especially since Terrance died at the age of 31 just before his birthday. I am 31 now and it scares me so a lot of times I break down.”

According to the United States National Heart, Lung and Blood Institute, sickle cell disease is a group of disorders that affects haemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. The sickle blood appears like a crescent when it would otherwise be round in shape. When red blood cells sickle, they break down prematurely, which can lead to anaemia. Anaemia can cause shortness of breath, fatigue, and delayed growth and development in children.

The rapid breakdown of red blood cells may also cause yellowing of the eyes and skin, which are signs of jaundice. Painful episodes can occur when sickled red blood cells, which are stiff and inflexible, get stuck in small blood vessels. These episodes deprive tissues and organs of oxygen-rich blood and can lead to organ damage, especially in the lungs, kidneys, spleen, and brain. A particularly serious complication of sickle cell disease is high blood pressure in the blood vessels that supply the lungs (pulmonary hypertension) and occurs in about one-third of adults with sickle cell disease and can lead to heart failure.

Episodes of pain associated with sickle cell are known as a crisis.

Terri-Ann says she recalls having a crisis as early as nine-years-old.

“I was getting severe back pains, chest, both legs and both hands. I was vomiting and had a fever. Mommy took me to the hospital and they discovered that I had an infection which triggered the sickle cell. I was given pain meds, antibiotics, fluids to rehydrate, medication for the fever, medication for the vomiting and I spent a total of 14 days at San Fernando General Hospital.”

Over 20 years have passed since that early episode and Terri-Ann still frequently visits the hospital, between 12 and 15 times a year.

Since battling the illness, she developed avascular necrosis in her hip in 2013. She had a total replacement of the left hip and now lives with a ball and socket and 10-inch steel to anchor it in place. Three years later, Terri-Ann developed avascular necrosis in her left shoulder. She now has limited mobility in the left hand and left arm at this present time. That has been the case for the past two years.

For Terri-Ann, sickle cell anaemia comes with both physical and financial costs which are difficult to bare.

Her medical bills for pain tablets alone costs between $2000 to $2500 per month.

“The hospital pharmacy gives 20 pain meds for the month however that only lasts roughly 3 1/2 days. For the rest of the month, I would need to purchase them myself at $13 or $14 for one, based on the pharmacy.  I have to take six per day. The hospital also gives a month’s dose of folic acid and hydroxyurea.”

Due to her ailment, holding down a steady job is a huge problem.

“Sometimes I would start a job, if it’s a job where I’m constantly on my feet, I wouldn’t be able to do that for too long because I would start getting pain in my legs. If I work anywhere that has air condition, I will get sick in a matter of days and I cannot work night shifts because I cannot lose sleep. Most times I am unable to purchase the things that I need, things that are necessary so it is a bit stressful.”

In a video posted to Facebook on Sunday, she explained her illness in a bid to raise awareness and spoke about remaining positive throughout her trials and tribulations.

She said too often, people are uneducated about sickle cell anaemia.

“Sometimes people treat you like it’s contagious, I want them to understand is nothing like that. The only people that could get it is my children through my genes. People have asked if I got it from sex or if they could contract it from sex with me.”

Terri-Ann said she did not want to beg for help but would appreciate any assistance given.

Persons interested in contacting Terri-Ann can do so at 715-8225.

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