This is a personal story of a journey about living with the illness pyroluria from a very dear friend whose sister lived undiagnosed with the condition for many years.
There is a urine test available. There is hope of
healing the condition.
But, as you will learn, without a diagnosis, the effects of the illness can be far more serious than they need to be.
This article aims to raise awareness of the illness.
If you haven't come across the name 'pyroluria' before, please make a mental note of it and of some of the symptoms. This information may be useful to someone you meet along the way.
I will give the contents for this article. Then over to my friend Mary to tell you about her personal experience with this condition.
Born and raised in England, my eldest sister Penny moved to California in her 30’s with her partner and lived there for fourteen years. America suited her enthusiastic, expansive nature and her life was full and rich.
While living there she worked in a variety of jobs including as a counsellor and a librarian. Penny was also highly skilled as a writer, photographer, artist and musician. Yet throughout her adult life, she was burdened by a bewildering array of physical and mental health problems, which gradually increased in severity.
After splitting up with her partner of many years while in the States, Penny struggled to cope on her own, and feeling at a total loss, she decided to come back to England; hoping that with our family’s support and free healthcare, she would be able to find a cure.
Penny was by now suffering from a wide range of symptoms, including: insomnia, hallucinations, anxiety, depression, digestion problems, severe fatigue, panic attacks, sensitivity to medication and environmental allergies. She and I visited a range of consultants and complementary therapists over the course of a year. Not one of them was able to determine the underlying cause of her health problems and nothing she was offered medically helped.
With all our attempts to find a solution having failed, and her symptoms becoming more extreme, Penny decided to return to the United States
A Doctor suggested that my sister take a urine test. This confirmed
that she had a blood disorder called pyroluria.
Penny had never heard of it. Neither had I. Nor has anyone I have spoken to since.
So, what exactly is pyroluria? As I have no medical expertise, the following description is adapted from the Integrative Psychiatry website:
was discovered in the late 1950s by a Canadian research team led by the
psychiatrist Dr Abram Hoffer.
He found that it can be induced by childhood trauma or a chronic infection.
It usually begins during the late teens and without treatment, continues throughout a person's life.
It can however start at any age, brought on by stress.
The symptoms can be mild, moderate or severe.
It has been estimated that approximately 10% of the general population have pyroluria. This is an alarmingly high percentage, given how few people have even heard of it.
With certain sub-groups in the population, the total increases so that estimates suggest around 20% of psychiatric patients and about 40% of schizophrenic patients have pyroluria, with a higher prevalence in women than men.
If one parent has pyroluria, there is a 50% chance that it may be passed on to a child. If both parents are affected that rises to a 75% chance.
Here is a list of pyroluria symptoms. Other symptoms are possible, but of course you can have these symptoms and NOT have pyroluria:
The main treatment for pyroluria is to take Vitamin B6 and
Zinc supplements at a higher than usual dose to compensate for the deficits
caused by the condition.
This can bring relief within days for straightforward cases.
For those suffering from more severe long-term effects, it can take 3-6 months to reach a level of stability.
Despite the many positive elements in Penny’s life, things would have been very different for her had the disorder been diagnosed when the first symptoms of anxiety and depression started during her teens. She had incredible courage, will power and tenacity but my sister was very unfortunate in that she was not diagnosed until she had reached the most severe stage of the disorder, and vitamin supplementation did not relieve her symptoms.
There may well have been other medical issues complicating her condition that were not discovered in time. We will never know for sure, but her health continued to decline to the point where life became intolerable.
One day, the phone woke me at 5am. It was a call from
America to tell me that my eldest sister Penny had taken her own life. She was
49 years old.
As horrific as this news was, it came as no great surprise to me, given everything that had happened to her.
My hope is that one day it will become routine for people with possible pyroluria symptoms to be given the simple urine test that would make such a huge difference to their health and well-being.
It is my heartfelt wish that in telling Penny’s story, many more people will get the diagnosis and treatment they need.
Please click on one of the links to the side of this page to share this
article widely on social media and help spread awareness.
Back to Katherine:
Thank you so much to Mary for telling us the story of her sister.
I have since heard a webinar with Trudy
Scott, CN in which she gave the astonishing statistic that 80% of her female clients coming to her with anxiety, have pyroluria!
Of course, having published this article, my ears pricked up!
She confirmed that Vitamin B6 and Zinc supplements can help.
These in turn help the production of GABA which can then help to heal insomnia.
My story with illness is of living with Chronic Fatigue Syndrome (CFS /ME).
Any chronic illness requires us to learn new skills and give ourselves new permissions.
Move to read my advice on health management approaches.