The Netflix series Supacell is a global hit.

Many Australia-based devotees who spoke to ABC News binged the show, but one Melbourne-based 'Supafan' said she was holding off on watching the last episode because she couldn't "bear for it to end".

The show is about five south Londoners who unexpectedly discover they have superpowers, but still have real-world problems to deal with, "because life doesn't just stop because you can travel through time with a snap of your fingers."

It's revealed in season one of the series that the supacell which grants the five their powers is a mutation of sickle cell disease (SCD), a hereditary condition that affects the shape of red blood cells.

In a statement to ABC News, creator, director and writer of Supacell, Rapman said he's proud of the impact the show has had since launching in June.

"I'm still getting messages from young people and parents about how they now feel empowered to talk about it with their friends.

"I've always tried to authentically reflect the lives of Black people in my stories, so it's exciting that Supacell will return to Netflix for a second season."

Rapman has always said he had hoped this superpowered twist on sickle cell disease would "make the people with it feel empowered, make them feel seen, just give them a voice."

You may know someone with SCD

Paula Shutt is the communications manager at the Sickle Cell Society in the UK and says Supacell has been a game changer in normalising discussions about the disease.

"It has reached the other side of the world.

"It's opened the door to some conversations about things like sickle cell trait…because they talked a lot about trait in the show."

Ms Shutt says people need to understand what sickle cell is.

"So, there could be somebody that you study alongside, somebody you see every day, somebody you work with that has the condition, and you don't really understand why they disappear [or] why they might have been having regular medical treatment," Ms Shutt said.

"But if you're working alongside them and studying alongside them, you could actually be a help to them and an advocate if they're not feeling well, if they have a crisis, and you're around."

'Sickle cell can affect absolutely anybody'

Ms Shutt says there are misconceptions about SCD.

"And what we're seeing now with changes in the diversity mix in [the UK] and in other countries, is that people that appear lighter skinned but are mixed race are turning up at hospital with sickle cell and being told, 'Well, you can't have sickle cell…it can't be that because you're not Black.'"

The urgency is often not recognised

Ms Shutt is thrilled that popular culture has brought SCD into people's consciousness because it can help educate the community, but also medical professionals.

"What I don't like seeing is that people, time and time again, over decades, have had issues when they've turned up to hospital, and they've turned up there in a crisis, which means they need really strong painkillers," Ms Shutt said.

"They need medical care. They need a haematologist to look after them. They might need to be admitted. You can't even sit down on a chair. 

"So, you're turning up at hospital in that state. You can barely even speak and advocate for yourself, and you're being told, 'No, you're looking for drugs. This is drug seeking behaviour. We're going to send you home.'

"And time and time and time and time again, people are getting this, or they're being told you need to sit in the chair and wait and wait and wait and wait and wait for somebody to come and see you. And the urgency of the situation not being recognised."

What is it?

Let's break down what SCD is.

Andrew Perkins is professor of Haematology at the Alfred Hospital in Melbourne, and professor of cancer genomics at Monash University.

"The parents feel guilty sometimes because they're well, because if you have one normal copy and one sickle copy, then you're fine.

"But you've got a one in four chance of having a child that has two bad copies."

The health promotions officer at Thalassaemia and Sickle Cell Australia Sally Barton says sickle cell affects red blood cells.

"Red blood cells are meant to be sort of circular shaped," Ms Barton told ABC News.

"However, with sickle cell the red blood cells are literally a sickle shape, so it's like a banana shape.

"And the haemoglobin in the red blood cells are very irregular as well. So, they're meant to be a circle. However, the haemoglobin, they're sort of strands. They're sort of straight, irregular, non- uniform, which creates that sort of change in the red blood cell."

Symptoms

Ms Barton says it's a very painful condition and can lead to crises.

"So, because the red blood cells, they're formed in sort of that sickle shape, and they're actually very sticky. So, they stick to our blood vessel walls and create blockages in the blood flow.

"So, you've got organ damage, high blood pressure, fatigue, and there's also a high risk of infections as well."

Professor Perkins says 90 per cent of the time, patients are "well and happy and conduct normal lives."

"And then they have crises where they suddenly get sick and the symptoms associated with that are pain, severe pain, often in the bones, chest pain, and that pain is due to a sickle crisis," Professor Perkins said.

Usually patients present to hospital, receive "heavy analgesia" and after a few days go about their normal lives.

"But there's other complications and symptoms associated with the pain that can be more problematic," Professor Perkins said.

"And these include things like strokes, often, mini strokes, and damage to the kidney."

Pregnancy is a risk and mums-to-be need to be managed in specialist centres that know how to intervene urgently if a crisis is about to happen, says Professor Perkins.

"So, a couple of different things can happen in pregnancy," he says.

"The placenta can have a little infarction like the stroke, but in the placenta, and you could lose your baby in late trimester, or even the mum herself can have a sickle crisis and get into serious strife."

SCD in Australia. Who does it affect and why?

According to the article Sickle cell disease in Australia: a snapshot from the Australian Haemoglobinopathy Registry, SCD is the most common monogenic disorder worldwide.

• Globally, it is estimated that 275,000 babies are born every year with SCD and that this will surpass 400,000 by 2050.
• Although the highest prevalence of the disease is in tropical regions, with migration, incidence is increasing in countries outside these regions.

A study in which country of birth was documented for the majority of patients analysed found:

• 64.3% were born in Australia.
• Self-reported ethnicity was available for 94.4% of patients, with the majority being of sub-Saharan African origin, particularly within the paediatric population.

Ms Barton says there's a connection between sickle cell and malaria endemic areas.

This includes Africa and the Caribbean, but also the Mediterranean, Asia and the Middle East.

But if someone has SCD, they're not protected, and are potentially more vulnerable to malaria.

Is there a cure?

Agnes Nsofwa is the executive director of Australian Sickle Cell Advocacy Inc (ASCA), which she founded as a support group for Australians suffering from SCD.

Originally from Zambia in southern Africa, Ms Nsofwa's youngest daughter, Mapalo-Joy, was born in Perth with SCD.

"I didn't know what it was," Ms Nsofwa told ABC News.

"I relied on finding out information on my own."

After first forming as a social media support group, Ms Nsofwa registered her not-for-profit organisation in 2018, having found a community of people living with SCD in Australia.

"We started connecting people. And then came to things like policy," Ms Nsofwa said.

In 2019, Mapalo-Joy was cured from SCD when she received a bone marrow transplant at the Royal Children's Hospital in Melbourne. Her sister Cecilia donated the bone marrow.

Ms Nsofwa says bone marrow transplants, however, aren't for everyone.

"This is a very rare curative option offered to families who have a match only," she said.

Treatment options

Ms Nsofwa says other treatments in Australia include:

• Hydroxyurea for management of the red blood cells.
• If people can't use Hydroxyurea, the next option is blood transfusions or later Red Cell Exchange.
• Pain relieving medication and antibiotics

In addition, the US and some European countries have the following treatments available:

• L-Glutamine
• Voxelotor
• Adakveo (only for a few patients) this drug failed the phase three clinical trials and is being phased out.

The recent regulatory approval of gene therapy in the US and UK for SCD is being touted as marking a new dawn in "the era of gene editing in medicine." 

But it will set patients back $US2.2 million ($3.26 million).

"I don't know in this lifetime whether any person can manage, maybe a few," Ms Nsofwa says.

"But when we talk globally, this condition affects mostly people from Sub Saharan Africa and Asia, one of the poorest continents in the world, I doubt whether the people that really, really are affected will ever get a cure if we talk about gene therapy."

Ms Nsofwa would like the government to look into funding it locally, after successfully lobbying for newborn screening, which will soon be implemented Australia-wide.

Maintain treatment 'even if they feel well'

ASCA provides essential information to newly diagnosed patients.

"[We let them know] why it's important…to take kids for every doctor's appointment," Ms Nsofwa said.

"Because it just takes one, just one [missed appointment] for things to go wrong."

For information or support visit TASCA or ASCA, and to donate blood visit Australian Red Cross Lifeblood. ASCA is hosting an event in Canberra in September. Season one of Supacell is on Netflix.