10% have this illness but most don’t know it (Pyrrole Disorder)

Zannie Abbott's daughter has pyrrole disorder, a condition with many physical and psychological symptoms, yet some doctors don’t know it exists

As a toddler, my daughter Sophie hit all the usual milestones. She walked, talked and ate when she was meant to. She learned to swim and, at preschool, to write her name. 

She had a few quirks. She liked routine, if she had a late night she’d go off the scale, and she didn’t like loud noises. But lots of kids are like that so we didn’t worry and it wasn’t until she started school two years ago that I started thinking things were not as they should be.

Sophie struggled to read. It was almost as if there was something blocking her brain. She was totally unable to deal with stress and could cry for an hour and a half about not wanting to go to school and not wanting me to go to work. By the time I actually got her to her classroom, I was often a wreck and wept all over her teacher myself on a couple of occasions!

Life was a struggle
By the weekend, she would be totally exhausted. We ended up cancelling numerous social events because she simply couldn’t cope. She would have to spend at least three hours each day doing absolutely nothing in order to function. In short, life was a struggle. The only thing that seemed to make her feel better was sport. She coped with netball and athletics and even a mini triathlon really capably and it obviously made her feel good.  

We saw various experts trying to find out what was wrong and received various diagnoses, before taking Sophie to a physiotherapist who did cranial and visceral manipulation. She told me there was a problem with Sophie’s gut and recommended we see a GP who specialised in that area. She diagnosed pyrrole disorder. 

Unusually, I had heard of pyrrole, as a friend’s son had it. It’s a genetic blood disorder that results in a dramatic deficiency of zinc, vitamin B6 and arachidonic acid – a long-chain omega-6 fat. 

Common symptoms include inability to cope with stress, emotional mood swings and sensitivity to light and sound. It also causes learning difficulties and auditory processing disorder, which means that in a noisy environment, it’s hard to single out the sound you should be listening to. In a classroom environment, that would mean that if other kids were talking, Sophie would struggle to hear the teacher.

It all made perfect sense and, sure enough, the urine test came back positive. The doctor told Sophie: “You poor thing, you really have been having a hard time of it, haven’t you?”, which was probably the best thing she could?have said. It was really nice for Sophie?to have someone acknowledge her condition like that.

A common disorder
Sophie, now seven, was prescribed supplements in a dosage accordant with her weight and it made an immediate difference. We saw changes overnight and, although I know our journey is ongoing, it’s been getting better ever since. She was instantly happier, slept better and concentrated better. Before she couldn’t retain information or do spelling but now it was as if that blockage had been unblocked. 

Because it’s genetic, my husband Richard and I have also been tested. Richard also found he had pyrrole and was prescribed zinc, which made him feel much better and less forgetful. The changes in him aren’t so dramatic but I think that’s because he’s an adult so he’s developed coping mechanisms, including sport. One symptom of pyrrole is an inability to efficiently create serotonin and exercise can help compensate for that. 

Apparently about 10 per cent of the population has pyrrole – it’s even higher among those with mental disorders such as attention deficit hyperactivity disorder (ADHD), schizophrenia and depression. That means that in a typical class of 25 to 30 kids, two or three have it and won’t be learning or behaving well.

It makes me wonder why every kid isn’t screened along with all the other tests. Treating Sophie was so easy and it didn’t just make her happier, it made our whole family happier. 

Physical signs of pyrrole disorder

White spots on fingernails
Larger mid-section
Sweet, fruity breath and body odour
Pale skin that burns easily
Overcrowded teeth and poor tooth enamel
Creaking knees
Cold hands and feet, even in summer
Common symptoms

Anxiety
Low stress tolerance
Mood swings
Depression
Motion sickness
Auditory processing disorder
Memory loss
Temper outbursts
Insomnia
Joint pain
Poor dream recall
Fatigue
Irritable bowel syndrome
Delayed onset of puberty
Hyperactivity
Craving for high-sugar and high-carb foods
From a GP

“Pyrrole disorder is quite common – almost a third of patients I see have it – but not many doctors know about it. It is a marker of oxidative stress, which occurs within the body as a result of physical and emotional distress. Our current lifestyle enhances oxidative stress – processed food, lack of exercise, toxins in our environment and emotional stressors. There is also a theory that chronic low-grade infections can contribute.” 
Dr Nicole Avard, GP, who specialises in integrative and nutritional medicine

Did you know? The symptoms of pyrrole – also known as pyroluria, kryptopyrrole or mauve factor – can be exacerbated by stress and a poor diet.

Article from Body & Soul