- Diagnosed with sickle cell disease

Fatumata's story

Fatumata Bah was just three years old when she moved to New Zealand from Sierra Leone. As refugees, Fatumata and her sister had to undergo mandatory health checks, and the results showed she had sickle cell disease.

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 and Mediterranean descent.

Fatumata’s older sister was also diagnosed with sickle cell however neither of the two children knew they were ‘different’ or unwell until much later in life. For Fatumata it was when she was struggling playing netball in primary school.

“I really wanted to go away to a netball competition and I just couldn’t keep up with everyone. It was hard realising I couldn’t play anymore,” says Fatumata.

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

It was around the age of 10 that Fatumata says things began to get tough and she realised she was living with a disease.

“I remember waking up my dad in the middle of the night and driving to Starship to get treatment,” says Fatumata.

From then on Fatumata’s health began to go downhill and she found herself in hospital more often.

Because sickle cell disease is not very common in New Zealand, doctors would often think Fatumata  was just having pain episodes and would send her home.

On a trip home to Sierra Leone, the higher altitude and lack of oxygen in the plane triggered a crisis causing a blockage in Fatumata’s spleen making her extremely sick.

“Luckily, it was a big plane and three doctors were on board who treated me 30,000 miles up in the air!” says Fatumata.

After the trip, Fatumata’s doctors realised how unwell she was and she had gall stones removed. Shortly after she underwent surgery to have her spleen removed too.

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

Fatumata says becoming so unwell at just 15 years old made her aware for the first time that she was living with a serious disease.

“It was a very depressing time for me and I withdrew from a lot of things in my life. I decided I needed to start making plans for when I had a crisis,” says Fatumata.

When Fatumata’s heath improved after her operations she decided to learn about sickle cell disease and she had an epiphany.

“I realised sickle cell disease was not just happening to me but it was a part of me,” says Fatumata.

Coming to terms with having a lifelong disease was tough for Fatumata but she says it made her more aware of her mortality and she decided to deal with things as best she could.

After finishing high school Fatumata decided to head to Dunedin to study at Otago University.

“I had a terrible year in Dunedin. It was so cold and it was a real reality check for my health. I moved back to Auckland and started planning how to deal with my disease,” says Fatumata.

Fatumata now has contingency plans in place for when she has a crisis and does her best to avoid having one by doing things such as keeping hydrated, ensuring her flu jabs are up to date and taking her medication consistently.

“I have a disability advisor at my university who helps me make plans for a crisis as well as the GP at Auckland University of Technology and I keep a subscription to St John’s Ambulance,” says Fatumata.

“My connection with Leukaemia & Blood Cancer New Zealand has also been so helpful and it’s great having a support system to relieve some stress off me.”

A large part of accepting her disease and trying her best to live well has been the support she has received throughout her journey.

“I’ve been so blessed to be surrounded by anamazing support network,” says Fatumata.

“My family and friends never gave up on me. It was their love and support that made me know I shouldn’t ever give up on myself either.”