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Sickle cell nothing to be afraid of

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Jeannaire Christopher-Peters’ childhood was spent in and out of hospital due to sickle cell anaemia, but today she lives a relatively normal life. She spoke about her experience in honour of Sickle Cell Awareness Month.(Photograph supplied)

Jeannaire Christopher-Peters was five years old when she had her first sickle-cell crisis.

Her arms were racked with pain and her elbows were noticeably swollen.

It was the first of many trips to the hospital.

“Sickle cell affects different people differently, so for me I had a lot of my crisis episodes when I was younger as a child and in my teen years,” the 41-year-old said.

“Now I don’t have many of them, but for some people the attacks become more frequent as they get older.

“Definitely from the time I was five and from elementary school days I had a lot of crises, but I did better than the average sickler because I was in hospital two to four times a year, whereas other people might be there every month. I would be in the hospital for like a week to ten days each time so I knew the nurses on the children’s ward and in emergency very well.”

Sickle cell is a blood disorder that affects about 300,000 children each year.

It’s caused by an inherited abnormal haemoglobin. The red blood cells are distorted or sickle-shaped as a result.

Because they’re fragile, they’re prone to rupture and can lead to blocked blood vessels, tissue or organ damage and intense pain known as ‘sickle-cell crisis’.

Mrs Christopher-Peters said the pain sometimes appears in her elbow or back; other times it travels to her chest, knees or hips.

“I still have my aches and pains anytime when I’m doing too much of any particular thing, so overextending myself isn’t recommended,” she said. “I live a pretty normal life, but symptoms still pop up from time to time. I have an ulcer on my leg that’s been there since I was 20 years old and it opens up occasionally. My shoulders and legs are swollen on a daily basis because of poor circulation and I’m also looking at potentially getting a hip replacement.”

Mrs Christopher-Peters spoke with Lifestyle about her experience in recognition of September as Sickle Cell Awareness Month.

She believes there’s still a lot of people who don’t know about the disease.

“One thing I’d tell people is it’s nothing to be afraid of; it’s not a contagious thing,” she said.

“One of the issues I experienced when I was growing up that I don’t have now because of the medicine, is we tend to have jaundiced eyes. Because our eyes are yellow that’s immediately what people focus on. We look strange and people feel uncomfortable, so that was always a hard thing to deal with growing up.”

Mrs Christopher-Peters said there were times when she felt alone in her illness.

“It can get very depressing because you’re away from your friends and in the hospital all the time,” she said. “At the time when I was growing up I wondered why this was happening to me. I didn’t like to talk about it because I was superstitious. Whenever I would talk about it I’d get sick the next day.

“Being sick so often I had a lot of time to think. You go through these crises, where the pain is so intense and those are the times when you feel most alone. It’s not something that’s easy to explain to other people, the type of pain you have and how you’re feeling.”

Faith and support from her family, especially her dad Calvin Christopher, helped Mrs Christopher-Peters get through it all.

Today she’s a wife, and mother to 13-year-old Caelin. She’s also a learning support teacher at Paget Primary School.

“A lot of the strength I have came after having my son,” Mrs Christopher-Peters said. “It was a very high-risk pregnancy. Women with sickle cell are advised against having children because of the pressure it puts on our system.

“He’s my miracle child and after having him I knew I needed to be there for him and didn’t have time to be sick anymore.

“Since having him, I’ve been in hospital maybe only four or five times. It has to do with my faith, but also that I’m very determined.”

Mrs Christopher-Peters makes sure to get plenty of rest and stay hydrated throughout the day. She also tries her best to stay positive.

“Every time you have a crisis, it knocks you out of your body for a few days, but it also helps to refocus you because you tend to take things for granted. Something like this teaches you to make the most of the time you have.”

Mrs Christopher-Peters is one of the founding members of the Bermuda Sickle Cell Association. The organisation has been offering support to people here with the disease for the past three years and will host a series of events this month.

Jeannaire Christopher-Peters’ childhood was spent in and out of hospital due to sickle cell anaemia, but today she lives a relatively normal life. She spoke about her experience in honour of Sickle Cell Awareness Month.(Photograph supplied)
<p>This month’s events</p>

Bermuda Sickle Cell Association events in honour of Sickle Cell Awareness Month:

Wednesday, September 16: An educational talk called ‘Health is Wealth’, with nurse Beverly Howell. The programme can be heard on Magic 102.7 at 5.30pm.

Friday, September 18: A professional development workshop for teachers and the general public.

Saturday, September 19: A fundraising luncheon featuring Edward Donnell Ivy. The medical officer at the Maternal and Child Health Bureau of the United States Federal Government, who has sickle cell disease, will discuss sickle cell care, advocacy and its effect on learning. The event takes place at the Coco Reef Hotel at noon. General tickets are $75; patron tickets are $100.

For more information e-mail: info@sicklecellbermuda.com.