4:21am May 10, 2015

This is when I lose any respect at all that I might have had left, for health food fanatics.

When you’re talking about a food, or maybe even a medication.

And you list off all these “horrible, scary, terrifying” side-effects that are possible from eating the food or taking the medication. Surely proof that nobody should eat it, right?

And then you reveal that you’re actually reading off a list of symptoms of PKU (phenylketonuria). Which is a disease that causes a person to be unable to tolerate certain foods and chemicals in their body (specifically, phenylalanine), that are harmless to anyone else. But to someone with PKU, they can cause irreparable damage to their body, including their brain.

People with PKU, generally know they have PKU. People without PKU, have no such “horrible, scary, terrifying side-effects” to be scared of from products that contain phenylalanine. People with PKU probably resent you using their lives and their disease trying to scare people without PKU into avoiding anything with phenylalanine in it. (Which is a whole lot of things, so avoiding it when you don’t have to is a major difficulty and may prove both cognitively and financially impossible for a lot of disabled people who don’t have PKU.)

PKU, by the way, is rare. It’s not like the majority of your readers are even going to be affected by it.

Actual information on PKU can be found here at the Mayo Clinic:

http://www.mayoclinic.org/diseases-conditions/phenylketonuria/basics/definition/con-20026275

Definition
By Mayo Clinic Staff
Phenylketonuria (fen-ul-ke-toe-NU-re-uh), also called PKU, is a rare inherited disorder that causes an amino acid called phenylalanine to build up in your body. PKU is caused by a defect in the gene that helps create the enzyme needed to break down phenylalanine.
Without the enzyme necessary to process phenylalanine, a dangerous buildup can develop when a person with PKU eats foods that are high in protein. This can eventually lead to serious health problems.
For the rest of their lives, people with PKU — babies, children and adults — need to follow a diet that limits phenylalanine, which is found mostly in foods that contain protein.
Babies in the United States and many other countries are screened for PKU soon after birth. Recognizing PKU right away can help prevent major health problems.
Symptoms
By Mayo Clinic Staff
Newborns with phenylketonuria initially don’t have any symptoms. Without treatment, babies usually develop signs of PKU within a few months.
PKU symptoms can be mild or severe and may include:
* Intellectual disability (formerly called mental retardation)
* Delayed development
* Behavioral, emotional and social problems
* Psychiatric disorders
* Neurological problems that may include seizures
* Hyperactivity
* Poor bone strength
* Skin rashes (eczema)
* A musty odor in the child’s breath, skin or urine, caused by too much phenylalanine in the body
* Fair skin and blue eyes, because phenylalanine cannot transform into melanin — the pigment responsible for hair and skin tone
* Abnormally small head (microcephaly)
Severity varies
The most severe form of the disorder is called classic PKU. Children and adults with less severe forms of PKU, in which the faulty enzyme retains some function, have a smaller risk of significant brain damage. But most children with these forms of the disorder still require a special diet to prevent intellectual disability and other complications.
Pregnancy and PKU
A woman who has PKU and becomes pregnant is at risk of another form of the condition called maternal PKU. If a woman doesn’t follow the special PKU diet before and during pregnancy, blood phenylalanine levels can become high and harm the developing fetus or cause a miscarriage. Even women with mild PKU may place their unborn children at risk by not following the PKU diet.
Babies born to mothers with high phenylalanine levels don’t often inherit PKU. However, they can have serious consequences if the level of phenylalanine is high in the mother’s blood. Complications at birth may include:
* Intellectual disability
* Low birth weight
* Delayed development
* Abnormally small head
* Heart defects
* Behavioral problems
When to see a doctor
Seek medical advice in these situations:
* Newborns. If routine newborn screening tests show that your baby may have PKU, your child’s doctor will want to start dietary treatment right away to prevent long-term problems.
* Women of childbearing years. It’s especially important for women with a history of PKU to see a doctor and maintain the PKU diet before becoming pregnant and during pregnancy to reduce the risk of high blood phenylalanine levels harming their unborn babies.
* Adults. Adults with PKU continue to receive care across their life span. Older adults with PKU who may have stopped the PKU diet in their teens may benefit from a visit with their doctors. Returning to the diet may improve mental functioning and behavior and slow damage to the central nervous system in adults with high phenylalanine levels.

So anyway… go to the above website to read more on PKU if you’re interested. I generally trust the Mayo Clinic more than I trust most places online for medical information, at least for things that are purely medical (I’ve heard mixed reviews of their psychiatric care, but that makes sense because psychiatric care is a mixed bag no matter who tries to do it right – and I don’t consider psychiatry to be a purely medical science the way it pretends to be). My mom is a Mayo Clinic patient and they saved her life many times over by looking past the short-sighted diagnoses she was getting from her local doctors, and doing every test in the book until they found things. Some of which were on the order of “We don’t understand why you’re still alive, let alone walking and talking almost normally.”

And if you want to scare people away from a food, don’t read off the list of symptoms that phenylalanine causes in people with PKU. That’s both dishonest and just… bad in general. In fact, there are precious few reasons to try to scare large numbers of people away from eating fairly common foods. Argh. And this goes double if you’re aiming it at people with chronic illnesses and telling us “If you don’t cut all these different foods out of your diet then you’re not trying hard enough to get well.” Plus, a lot of the foods that contain phenylalanine are foods that other chronically ill people’s bodies desperately need – foods that are high in protein, for example. So trying to scare people away from eating what they need, that’s even worse.

(I’d point you to the post where I saw this happen, but it was months ago, and is lost somewhere in the post-delirium amnesia gap.)