Wellington - Diagnosed with sickle cell disease

Dehji's story

For Dehji Akran a friendly hug is enough to send him to hospital in severe pain. Dejhi was born in Nigeria with sickle cell disease and says even with his condition he is blessed and mostly happy-go-lucky.

Sickle cell disease is an inherited blood condition where the red blood cells become sickle-shaped. It’s not commonly seen in New Zealand because it affects people mainly of sub-Saharan African descent.

“I have heard that there are only three people with sickle cell in the Wellington region including myself,” says Dehji who moved to the city in 1999.

Currently there is no cure for sickle cell disease and it can cause many serious complications including stroke, increased risk of infection and kidney damage.

Like many others with sickle cell disease, Dehji experiences crises. This is when the sickle-shaped cells block blood flow to an organ often resulting in debilitating pain for a few days or even weeks.

I’ve had it all my life and was only three or four when I had my first crisis.

“You never really know what’s going to happen. One moment you’re happy and then boom you feel dizzy and then there’s severe pain. It starts with your ankles then travels up your legs and back, up to your neck until you have issues breathing.”

Over the years the 52-year-old has found ways to manage his crises by taking two pain killers and wrapping himself in a duvet.

“I wait for a few hours and then I’m usually okay, but if I’m having trouble breathing I know I can’t look after myself and I go to hospital.”

If a crisis comes on while he is out he says there is very little he can do to manage it, but Wellington Hospital has set up systems for Dehji to help him avoid sitting in A&E for extended periods.

“I don’t need to spend much time in A&E anymore, I go to the haematology ward and they provide me with liquids and usually after two or three days I can walk out of there. I feel very lucky and grateful. I know that I will be ok 99.9% of the time,” he adds.

It was during one of these crises that Dehji lost the sight in his left eye.

“I was in hospital when the back of my left eye began to bleed. The blood vessels in your eyes are quite thin and they were pushing against my retina. “The medication and anaesthesia they gave me to help reduce the swelling made me feel very sick and caused further crises. Eventually my retina broke and I lost the sight in my left eye,” says Dehji.

Recently Dehji noticed his veins are getting thinner, making it harder to get IV lines into his blood vessels. To help him avoid the hospital he drinks eight litres of water a day.

He says the more hydrated he is the less likely he is to have a crisis.

When he was a child Dehji migrated from Nigeria to the UK and received most of his schooling there.

He headed to boarding school for his secondary education before attending university, but his condition caused him to finish much later than his peers.

“Every time I played rugby or did cross country I had to spend the next four days in the sickbay. I had periods of severe sickness during school, which was a huge issue in my education.”

Dehji persevered and graduated from university. He landed a job as a systems test analyst, a career he continued after moving to Wellington.

“My partner and I had our son here in New Zealand. It didn’t work out with her, but I decided to stay and watch the young man grow up. He will be 15 this year.”

Although Dehji’s son is a carrier of the sickle cell gene he is unlikely to experience crises because his mother was not a carrier.

“He just needs to be careful of who he decides to have children with,” Dehji adds.

After deciding to stay in New Zealand Dehji was faced with a number of hurdles.

Not only did he find out he was living in a leaky house, but at the same time he was dismissed from his employment due to his ill health, which has resulted in ongoing legal battles.

Despite his personal difficulties, Dehji likes to have a positive outlook and is actively involved in educating people about his condition.

“Every year I volunteer myself to medical students, so they can see someone with sickle cell and ask questions,” says Dehji.

Dehji says he is grateful because he knows the pain is only temporary. “When crises happen I know I will get through it,” he says.