This video (below) was made a few months after my diagnosis.
My diagnosis was truly been a blessing as it helped me to put together all the pieces of what had seemed for many years, to be a huge, confusing, never ending, constantly expanding puzzle.
It also lit a fire inside me to help create more awareness of this genetic disorder that is estimated to affect around ten percent of the population.
So What IS Pyroluria?
To begin to understand what Pyroluria is, we first need to have some understanding of what Pyrroles are.
Pyrroles are metabolites that are created in the spleen during the processing of Haemoglobin (the oxygen carrying molecule in our blood – aka red blood cells). The other (proper) name for them is hydroxyhemopyrrolin-2-one (HPL).
I don’t know how to pronounce that, so pyrroles it is…
Now as far as medical science is aware, pyrroles are a byproduct of hemoglobin synthesis, and they have no other role in the body. When pyrroles are created they are excreted from the body via the kidneys, in our urine.
When pyrroles are excreted, they bind Zinc and Vitamin B6 rendering these essential nutrients unavailable to the body, and causing them to pass from the body via the urine, still bound to the pyrroles.
Now for someone who has normal pyrrole levels, this isn’t a problem. But when pyrrole levels increase, then it becomes a problem!
The more pyrroles your body produces, the more zinc and vitamin b6 is being lost!
When we experience stress it causes pyrrole levels to increase in our body.
This means that even if someone doesn’t have the genetic version of Pyroluria, they can still have elevated pyrroles when they’ve been under chronic stress, resulting in the loss of valuable zinc and vitamin B6 every time they pee.
And this is one very real reason why chronic stress can impact our health!
More stress can mean more pyrroles, and less zinc and B6 available for use by the cells of the body.
The other thing we need to realise, is that when zinc and vitamin B6 are deficient, over time other nutrients are affected and other deficiencies may develop.
The common nutritional deficiencies in those suffering with pyroluria include:
- Vitamin B6
Due to an increased stress response, or reduced capacity to handle stress in pyrrole disorder, there may also be an increased requirement for other nutrients also such as Magnesium.
Symptoms of Pyrrole Disorder (Pyroluria)
In cases of the genetic version of Pyrrole Disorder, pyrroles may be elevated all the time, even when stress is low, and increasing when stress is being experienced.
Common symptoms of Pyroluria are:
- Panic attacks
- Social difficulties or awkwardness
- Low tolerance to stress
- SEVERE inner tension
- AND a whole barrage of physical symptoms!
As you can imagine, these symptoms in themselves can lead to a more stressful life. They have a compounding effect as the symptoms of Pyrrole disorder commonly CAUSE stress due to the very symptoms it causes!
It’s a bit of a slippery slope…
When pyrrole disorder is undiagnosed and untreated, as it often is, worsening nutritional deficiencies and the effects that the symptoms may have on the disorder itself mean that the mental AND physical symptoms of pyrrole disorder can be many and varied.
Pyrrole disorder symptoms may include all or any of those already listed above, as well as:
- Sensitivity to loud noises
- Sensitivity to smells
- Sensitivity to bright light
- Tactile sensitivities
- Hormonal problems
- Delayed puberty
- Thyroid issues
- Metabolic issues
- Abnormal fat distribution
- Abdominal pain
- Joint pain
- Knee pain
- Memory issues
- Explosive anger
- Irritable bowel syndrome
- Creaky joints
- Absence of dream recall
- Fluid retention
- Emotionally unstable
- Intolerance to drugs
- Intolerance to alcohol
- Substance abuse
- Lack of hair on head, eyebrows and eyelashes
- White skin that burns easily
- Low libido
- Social withdrawal
- Leaky gut
- Digestive issues
and many more…
This is not an exhaustive list of symptoms by any means.
The truth is that because of the nature of Pyroluria and the effects that it can have on the body, the list of potential symptoms is huge.
I know from my own personal experience, because I didn’t find out I had Pyroluria until I was fifty years old, almost every part of my body has been affected in some way over the years, and my symptoms have been more than a challenge at various times in my life. In fact they have had a major (negative) impact on my life many times.
To say that life has been challenging at times would be to understate my reality, but fortunately I am pretty resilient and I managed to pick myself up and keep going each time. However in saying that, when you have no other option but to cope, you just do….
Living With Pyrrole Disorder
They say that variety is the spice of life, but not when it comes to pyroluria symptoms. My challenges have been varied for sure, and began as far back as I can remember.
From the social awkwardness and anxiety that were always there as a child, to the fluid retention, morbid obesity, recurring abdominal pain (requiring hospital visits many times) and horrendous menstrual cycle that started as a teenager; and on to the panic, the fear, the skin and digestive problems, allergies, depression and much more that have plagued me as an adult, it has seemed that one thing after another has piled itself into my experience, messing up my life, making it hard, with nothing ever truly resolving, but instead being managed by self education, experimentation, lifestyle adjustments, attitude adjustments or by simply increasing my coping skills and finding ways to make new excuses for why I was doing the things I do.
This is what has made the journey so difficult, and so confusing.
I’ve had times in my life when I’ve been too fearful to leave home, too panicked to stand in a queue, too scared to leave power points turned on or even plugged in at night time, too tired to function, too fat to live and so very close to suicidal.
At times I’ve lived in pain, both mental and physical, while smiling and pretending everything was just fine.
At times I’ve been almost convinced that I was truly crazy, and I’ve wondered how I would manage to continue to live and function day to day, in any kind of a ‘normal’ fashion.
But this is what pyrrole disorder is.
Some sufferers are obviously not so bad, and some poor souls are much worse. But when diagnosed early, simple nutritional supplementation can prevent sufferers from having to live as I have, or worse, suffer the way I know many with undiagnosed Pyroluria have suffered: being labelled, misdiagnosed, treated with psychiatric drugs, forced to do things they don’t want to do, being committed to psychiatric hospitals, having their life taken away and their rights removed.
My heart and my soul bleeds for them when I consider what they must go through.
I’m lucky, and I’m incredibly grateful.
I’m grateful that my inner guidance steered me away from doctors and the drugs they push, instead being guided by my internal knowing toward natural remedies, nutrition and lifestyle to find answers to what was going on with me. If I hadn’t listened to my inner voice, if I hadn’t questioned the status quo, I can’t imagine where I’d be now.
Hell I should imagine – Or Heaven…
I’m super grateful that when I was finally so desperate that I actually went to doctor, I again followed my inner guidance and chose a doctor who knew what Pyrrole disorder was, and recognised my symptoms immediately.
I’m so eternally grateful that I finally found an answer.
So many haven’t.
That needs to change.
And change it will….