CHRIS-ANN Ward is paying an exorbitant price to stay alive, battling sickle cell (SS) disease for 21 years.

Her life has been a blur of hospital visits coupled with multiple surgeries, orthopaedic interventions, pain and massive medical bills.

In an interview with the Jamaica Observer, Ward recounted her ordeal with the disease, at times her voice cracking as she struggled and grimaced through the pain.

“I was diagnosed at six months. My parents both have sickle cell trait. When I was nine I was sickly. I’ve been on every ward at [Bustamante Hospital for Children] except the burn ward. That’s when I found out the SS disease was eating out my hips and one of my legs was growing past the other,” she said.

From there, Ward would attend frequent sickle cell clinics, was placed on crutches, then attended orthopaedic clinics until she was placed in what she describes as “an unusual cast”.

“It was wrapped around both thighs and my feet were four inches apart. I wore this cast for a year through primary school but my school — Alpha — Supreme Ventures and other sponsors got me a hip abduction brace and from grades four to six I had to wear it everyday,” Ward told the Sunday Observer.

Entering high school, Ward experienced some relief as the disease gave her somewhat of a break.

“I would still get sick, but it wasn’t bad. I was able to do cheerleading, netball, sing on the choir, and I did Pathfinders. I was able to do all that and not feel any great pain,” she said.

But in her final year of high school things took an ugly turn when she was hospitalised and had to do her Caribbean Secondary Education Certificate (CSEC) examinations under less than ideal conditions.

“I started doing CXC at grade nine so as to not have too much on my plate, but grade 11 was my first crisis in high school. I was hospitalised; it was pain in my head, I couldn’t see. I was brought to UHWI [University Hospital of the West Indies] and was kept there. I wasn’t allowed to go home but I had exams. I was given morphine, pethidine — those strong stuff — and a taxi was provided for me to go to my exams. Another time I fainted on the bus and an invigilator had to be sent to the hospital for me to do the exams,” Ward said.

Despite the odds, Ward gained nine CSEC subjects with grades two and three. She then enrolled in the diploma in dental assisting programme at University of Technology, Jamaica but was told to discontinue as she got ill. This led her to the Global Institute of Certified Specialists through which she became a certified phlebotomist, graduating with a 4.2 GPA.

Subsequently Ward worked at a clinic, but because of having a compromised immune system and increased exposure to sickly people, she had to leave. She subsequently took a job at a call centre where she has been for three years.

Now, though, she is on leave without pay due to the current state of her health.

“I am basically bedridden so I have to stay in bed and constantly turn, as depending on the side I am on the pain will increase. For a while I was okay, then the pains started again to the point I was passing out. They decided to do further checks and I was recommended for orthopaedic surgery as they said my hips were destroyed,” Ward told the Sunday Observer.

That was in June 2020.

In a bid to save her hips and prevent paralysis, Ward’s doctors recommended decompression surgery, which she did in August 2020 to help return blood flow to her hips that were deteriorating faster than expected.

But the procedure, which was touted as the holy grail to save her hips for at least three years, failed to bring the desired results.

“When they did the X-rays after a couple months after the decompression, there was no improvement. I was just getting worse, blood was not going to my hip. You know when you eat chicken bone and leave it out and it becomes white and crumbles? If you look on my X-ray, it’s like that. For the right hip, it’s extremely worse…that’s the one I am doing first for the implant and then I have to wait a year or until I am strong enough before I can do the left,” Ward said.

To date, Ward has done seven surgeries and has exhausted her finances.

“From January 2021 I have been unable to work because of my hips and all my savings have been used to pay hospital bills and purchase medication monthly. Initially funds came from my mother, loans, and savings I had when I was working. My co-workers also helped out a lot,” she said.

According to Ward, morphine and gravol would run her $10,000 every two weeks and, in addition to the pain medication, she has had to spend $8,000 every two weeks for medication to treat a recent diagnosis of depression and post-traumatic stress disorder.

Ward said her story received some traction on social media and she has been able to get monthly supplies of her medication. However, she still has a high hospital bill at UHWI, plus she needs to raise US$20,000 to cover her hip replacement surgeries and post-operation recovery costs.

“I currently owe over $900,000, which is an amount cumulating from 2016. Because I haven’t been working I had to ask for the amount to be billed and commit to a payment plan when I start working. The hip implants for one hip and surgery come up to $1 million or a little over, as you have to pay 80 per cent at the hospital before admission then after, you pay the remaining 20 per cent. That doesn’t include the bill to remain in the hospital to recover,” she said.

Although she remains optimistic, Ward admitted that at times her plight takes a toll on her mental health.

“I have to try and maintain my mental health to be okay. I read Psalms 3 everyday. It helps me mentally and physically and gives me hope. At times it gets extremely rough. I’ll be at the hospital and I am treated okay until I say I have sickle cell, and you’re framed as trouble. Some sicklers do abuse the system and everyone gets placed under one umbrella,” she said.

“If my mom’s not there, sometimes I have to cry before people look at me. Why? The medication is a dangerous drug and very easy to get addicted to. Some sicklers will come to the hospital every day, even if not in pain, so with that, when those who really need the help come, we suffer. But some doctors who know you will look out for you. However, if you go one day and there is no doctor like that, it’s going to be one of the hardest days,” she said, adding that at times she just bears the pain to avoid that experience.

Her mother, Shaneke Richards, said the struggle over the years with the disease has been really difficult.

“Sleeping at Children’s Hospital, UHWI hospital — it’s hard. Chris-Ann has done seven surgeries already; I don’t even know where to start from. To know she went through high school, had to be absent but was always on top. When she was doing her CXC the sickle cell hit her in her head. I was with her and see her sleep and do the exam. To know she did eight subjects plus one outside and still pass…when CXC results came out she fainted as she couldn’t believe, with all those aches and pain, she come out on top,” Richards said.

“As a single mother I am proud of her because she fight the good fight. She deserves better. Knowing her two hips have been damaged and she needs the implant is not easy to process. She is bright and if given the chance, she can live a better life. She can work, and I lift my hat to those at the call centre she works who keep her on, even though she is not being paid. They didn’t have to,” the mother said.

“Just the panadeine injection is $24,000 for two weeks. Tell me how mi do it? I try with Chris-Ann and I am holding on and trusting she can get to do the surgery so she doesn’t get paralysed, as the sickle cell is eating out her hip bones. It doesn’t stop there because after the surgery is the recovery. I just want her to have a chance,” Richards said.

Anyone wishing to assist may donate to Ward’s GoFundMe account at www.gofundme.com/f/help-21yr-old-chrisann-to-do-a-hip-replacement  or to (Savings) A/C#065152290 at NCB Duke Street.