Faith Kitt, 14, suffers from Complex Regional Pain Syndrome (CRPS) and is likely to be in pain for the rest of her life. She was injured playing netball at Hamilton's Minogue Park four year ago.

WARNING: The video on this story contains a scene which may be distressing.

A solo mum is locked in a battle with ACC over financial assistance while she cares for her teenage daughter who is battling the most painful condition on earth.

Faith Kitt, 14, has been living with Complex Regional Pain Syndrome (CRPS) since injuring her ankle during a netball game in 2013.

The Hamilton teenager who once loved playing sports said she's worried about her future, and at times the seizures she experiences can last up to seven hours.

"It's so scary to have no control over my body [during a seizure]," said Faith. "CRPS has taken over my life and I just want to be a normal teenager again."

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CRPS, an invasive neurological disease which causes a person's nervous system to become irregular, sends signals to a limb that it's in acute pain when it's not.

CHRISTEL YARDLEY/STUFF Faith would like to return to a "normal teenager's life" but knows it will be difficult to get there.

The McGill Pain Index lists it as more agonising than the amputation of a finger or toe without painkillers.

In Faith's case, the pain becomes so intense she sometimes spends months off school. As a result, her mother, Tracie Kitt, has been forced off work to care for her full time.

ACC confirmed that in 2016, the family sought financial assistance for Faith's condition and her mother's role as a caregiver.

Faith was assessed for a permanent impairment allowance, which if granted, would have helped the financial strain on the family.

In a statement, ACC said: "Faith's mum asked for compensation for staying home to look after Faith. When such requests are, we get a support needs assessor to look at what help Faith needs to manage, which we did in 2013.

"The assessment recommended some rehabilitation programmes and equipment for Faith, which she has received, but it found she did not require any support in addition to the normal level of care a parent provides for their children."

However, ACC said it declined the claim and rated Faith at 0 per cent on the basis that "through treatment she is expected to recover from CRPS".

But Kitt finds ACC's response puzzling. "They certainly haven't taken into account Faith is not like any other healthy child," she said.

Since her ankle sprain in 2013, Faith has had 11 covered claims - five in 2014, three in 2015, including a wrist fracture, one in 2016, and two in 2017.

Faith has countless hospital appointments and physiotherapy sessions to counter the daily battle with pain and immobility.

The decision to reject their claim was made following two years of unsuccessful treatment, and now more than four years later Faith is still getting treatment for the same symptoms.

"ACC can not say Faith will recover when we look past the last five years," Kitt said.

"With all my heart I hope she does and we can get back to a normal way of life, but when does ACC consider something long term - does it have to be another five years?"

ACC said that Faith has cover for CRPS and is receiving treatment for it though a pain management programme which involves a physio, a psychologist and a paediatric pain specialist.

Although CRPS can spread, ACC said that the treatment Faith is receiving for it covers her whole person - it is not just restricted to her ankle.

If CRPS is not detected early it can often be incurable and the severe pain causes such frustration, anxiety and depression, that it has been labelled the "suicide disease" by those who suffer from it.

It took more than six months for Faith to be diagnosed, and the disease has since spread to other parts of her body, forcing the once sports-mad teenager to use crutches and a wheelchair - while taking a concoction of daily pain medication.

CHRISTEL YARDLEY/STUFF Faith's mother, Tracie Kitt, has had to quit her job to become a full time carer and is fighting ACC to provide financial support to the family.

Successful treatment of CRPS is highly variable - children and teenagers tend to have better outcomes than older people - but there are no clinical studies to suggest recovery is assured, or not.

Dr Kieran Davis, a specialist anaesthetist at The Auckland Regional Pain Service (TARPS), said a quick diagnosis is critical to a successful treatment because the patient enters into the right physiotherapy early.

However, Davis, and other international medical authorities, agree much more research is needed to understand the causes of CRPS, how it progresses, and the role of early treatment.

Research suggests a diagnosis within three months provided the best opportunity to beat it, he said.

According to a 2017 CRPS Network Australia survey, Kiwis with the condition are reporting an average diagnosis time of 14 months.

Faith's predicament is a familiar one for Kiwis who suffer from CRPS.

Complaints that doctors do not believe their pain or receive the wrong diagnosis and initial treatment are a common feature in discussions on the private Facebook page sufferers have created to support each other.

In February, Kitt insisted a second assessment was conducted and ACC said in a statement it "will be arranged once the paperwork is completed". She has still not been told when it will happen.

"She got CRPS when she was nine and lost the last part of her childhood and has lived with constant pain that at times can be extremely high and can lower in intensity but is always there.

"The fact she has had 11 injury claims that were a result of the first injury in five years is crazy and not a normal childs life."

During her five-year ordeal, Faith's confidence has taken a big knock as she begins to understand the enormity of her condition.

"I miss playing sports and dancing, and just doing things with my friends like any other normal teenager," Faith said.

WHERE TO GET HELP

* In an emergency: call 111

* Lifeline: 0800 543 354 (available 24/7)

* Suicide Crisis Helpline: 0508 828 865 (0508 TAUTOKO) (available 24/7)

* Youthline: 0800 376 633, or text 234 (available 24/7) or talk@youthline.co.nz or live chat (between 7pm and 11pm) http://livechat.youthline.co.nz/mibew/chat?locale=en&style=youthline

* Kidsline: 0800 543 754 (available 24/7)

* Whatsup: 0800 942 8787 (1pm to 11pm)

* Depression helpline: 0800 111 757 (available 24/7)

* Samaritans 0800 726 666

* Healthline - 0800 611 116

* For more information about support and services available to you, contact the Mental Health Foundation's free Resource and Information Service on 09 623 4812 during office hours or email info@mentalhealth.org.nz.

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