The teenager burning from the inside:

The teenager burning from the inside: How a young woman lives with a rare condition that causes her to feel like she’s been ‘set on fire’ and causes pain ‘like childbirth’

  • Moana Ruhfass was diagnosed with Complex Regional Pain Syndrome in 2013
  • McGill Pain Scale measures CRPS sufferers’ pain as being worse than childbirth
  • The pain feels like burning, stabbing, shooting and throbbing sensations in limbs
  • The slightest breeze can trigger a rush of teeth-clenching pain in Moana’s body 
  • She suffers blackouts and non-epileptic seizures that take days to recover from
  • CRPS is dubbed the ‘suicide disease’ as 40 per cent of sufferers take their lives 

A sprained ankle has lead a teenage girl to suffer ‘fire-like’ pain that doctors have compared to childbirth, leaving her seizuring for three hours and unable to bear a drop of water on her body.

As a sporty child, Moana Ruhfass was used to getting injured, but after the seemingly innocuous injury at athletics when she was 11, she didn’t bounce back. 

Moana’s pain only got worse and eventually spread to her leg, hips and shoulder; leaving her in excruciating agony that can be triggered by the slightest gust of wind touching her body.

In 2013 she was diagnosed with Chronic Regional Pain Syndrome (CRPS), a neurological malfunction of the central nervous system that results in burning, stabbing, shooting and throbbing pain.

And at just 16-years-old, Moana has lived in constant agony for almost half her life from the condition which has been dubbed the ‘suicide disease’; which sees 40 per cent of sufferers take their own lives.

She regularly suffers non-epileptic seizures that can last three-and-a-half hours, and described the pain of her debilitating disease as feeling ‘eternally on fire’.

In fact, McGill Pain Scale measures the pain of CRPS sufferers as being even worse than childbirth.

‘I also feel pain like someone is constantly stabbing me, pain like it’s lightning striking and painful pins and needles,’ she told Daily Mail Australia.

Moana Ruhfass has Chronic Regional Pain Syndrome, a neurological malfunction of the central nervous system that affects a person’s limbs and results in burning, stabbing, shooting and throbbing pain

Moana regularly suffers non-epileptic seizures that can last three-and-a-half hours, and described the pain of her debilitating disease as feeling ‘eternally on fire’

‘It can get to the point where I can’t even stand the wind on my skin or moving at all.

‘I sometimes can’t even shower my foot because even a drop of water would have me screaming.’

Moana’s pain can get so severe that many nights she relies on sleeping tablets to get her to sleep at night, and was prescribed heavy doses of morphine when she was just a child.

When Moana’s condition deteriorated to the point she became confined in a wheelchair, she slightest breeze could trigger a rush of teeth-clenching pain in her left ankle, which spreads up to her hips, lower back and shoulder. 

Moana and her parents Manfred and Joanna moved to the city in 2013 so she could attend the physiotherapy program at the Sydney Children’s Hospital.

She spent 10 excruciating hours a day in physiotherapy, as therapists tried to desensitise and reset the pain perception in her neuro pathway

When Moana’s condition deteriorated to the point she became confined to a wheelchair, she slightest breeze could trigger a rush of teeth-clenching pain in her left ankle, which spreads up to her hips, lower back and shoulder.

Moana spent 10 excruciating hours a day in physiotherapy at Sydney Children’s Hospital when she was 11. Therapists tried to desensitise and reset the pain perception in her neuro pathway

The therapy was partially successful, and enabled her to walk again, however, the unbearable pain she experiences remained constant. 

But nearly two years on from intensive therapy, Moana’s pain has flared up again, and she suffers from blackouts and non-epileptic seizures.

‘I have good and bad days. On my good days I still have constant pain but I get used to it and manage it,’ she said.

‘But on my bad days I can’t even bear someone touching me. The weight of a blanket and lying down hurts but it’s better than being on my feet.’ 

At times her full body convolutions are strong enough to throw her tiny frame onto the ground.

These violent seizures can occur once or twice a week, and last anywhere from one minute to three-and-a-half hours.

For every seizure she suffers through, it takes between three and four days to recover.

Moana’s dog has even saved her life a number of times during her violent seizures.

The McGill Pain Scale measures the pain of CRPS sufferers as being even worse than childbirth

‘Whenever I have a fit she instinctively puts her head under my head to keep me banging against the ground,’ she said. ‘I always manage to wake up when she does that.’

She is only able to attend school twice a week and only for a few hours at a time before her agonising pain sends her back to bed.

‘I’m way behind on my education and I’m not able to concentrate, to study or keep up in class because of my pain and low concentration,’ she said. 

‘I get stressed a lot in school, I get easily tired and my pain gets worse for it and it wears me down.

But even for the brief moment the pain subsides, Moana’s suffering is never far from her mind.  

‘I get panic attacks about every time I’m at school due to the stress of it and the pain,’ she said.

‘Every teacher and some of my classmates are very cautious with me and kind of scared that something’s going to happen and I really hate that they’re treating me like I’m going to break.’

‘Most of the days of of the week are bad days for me, that’s when I’m confined in bed and the rest of the days that might be good I try to go to school, I might even go out with my friends.’ 

Moana’s father Manfred said her emotional and physical wellbeing is slowly deteriorating. 

‘Within the last year that she has now lost all hope of recovery or improvement of her situation – she is losing the will to live,’ he said.

It’s littler wonder Complex Regional Pain Syndrome has been dubbed the ‘suicide disease,’ with 40 per cent of sufferers committing suicide; unable to live a life of chronic unbearable pain. 

‘Over the years I’ve gotten used to having some amount of pain, I’ve built up a pain tolerance, but to be honest It’s never enough to get me through the pain without a struggle,’ she said. 

To alleviate her suffering, Moana and her parents considered Dorsal Root Ganglion Stimulation Treatment, which involves a small device being implanted along the spinal cord.

Moana’s hopes at leading a normal life hinge on a last ditch treatment plan in the US, which costs AUD$65,000 

But due to the invasive nature of the treatment and the 50 per cent success rate, the family decided against it.

Moana’s hopes at leading a life free from daily agony now hinge on a last ditch treatment plan in the US, which costs AUD$65,000.

Her father Spero Clinic, which is located in Arkansas, has an 83 per cent success rate.

Five Australian kids have already undertaken the treatment and returned home pain free.

‘All the trestments I’ve tried so far have never cured the pain they just ease the pain. This is the first one that gets rid of the pain,’ Moana said. 

Spero Clinic uses a range of different procedures that target patients’ neuro systems in an intensive three month therapy.

Moana’s family have set up a Go Fund Me account to raise money for the costly treatment, and have so far raised $17,000.

Chronic Regional Pain Syndrome 

CRPS is a debilitating chronic pain disorder that usually occurs after a minor injury to the hand or foot.

It can also occur after more significant traumas, for example surgery to the hands, feet or to other parts of the body like the knees or shoulders. 

Doctors still aren’t entirely certain why and how CRPS occurs, but know that it can be a disabling and excruciatingly painful condition that in some cases can last a long time.

CRPS is characterised by certain changes to the painful area which might include exquisitely sensitive skin (where even a light brush could be painful), swelling, redness, warmth, and changes to the way the hair and nails grow. 

The hand or foot may not function correctly and cramps can occur. Later on, the area can look mottled and feel cold.

People with CRPS pain report reduced or painful movement, causing, for example, the inability to make a fist. Pain may affect the arm and shoulder, leg, knee, foot, or hand.

People with CRPS notice altered skin temperature, colour, and sweatiness, changes in hair growth and sometimes odd features like very fast or slow nail growth.

Source: Read Full Article