There is a lot of debate in the PKU community this past week due to a book called “Defy Your Doctor and Be Healed” by Sarah Cain Corriher. In regards to her chapter on “infantile phenylketonuria” and how dangerous it is and misinformed she is and how grossly inaccurate the information is . Such as her claims in being able to heal PKU, and that PKU is caused by women on drugs!
These claims are totally totally fake . She has no medical knowledge, facts, research or hard evidence to prove this or back it up, she is not a medical professional yet she has published this.
I am not disagreeing with the fact that its a Bull***t article , I do agree that is discreditable and wrong. However I have not involved myself in any of the debates nor have I ACTUALLY read the article. I have had my opinions asked and what i feel about it. I have declined to give it any response until this point. I feel that giving it any attention gives it power. Up until now I have simply ignored it. Why have I ignored it? so not to give it power, so not to give it away to spread, or to give it any credit.
This lady is one person, one voice. We as a community have way more power to do good and to have a voice to educate, advocate, support and spread awareness. We have done more good for each other, and for those around us. We have a much more wide reach. For each person we educate and share PKU with, that is one more person who will be less ignorant, and less likely to be naive enough to read this rubbish.
Dont get me wrong, I understand why everyone is so upset, but petitioning and trying to get the book removed is pointless. Sharing her personal contact information and leaving comments on her facebook in a mod like mentality is not going to gain anything.
What will have positive impact, is educating your friends on family on the truths of PKU. Of continuing to stand up and raise our voices in our own lives and societies, spreading truth, facts, information, websites and awareness. using our own social media to share with our friends and family. For every share this story has been given id rather see us each share a true fact about PKU on our facebook profiles for our friends to see.
Share a page, a website, a low pro company, advocate or story.
Many are worried a new parent would stumble upon the article, I understand. However try this, Google PKU. The results depend on your browsing history , for myself my own blog comes up, and the most visited pku sights i have been too.
As a new parent when you google PKU for the first time, you’re more likely to find a facebook group or a credible source and website first. For them , you would be able to interact with real people and join in positive discussions and be educated. ALso keep in mind, new diagnosed families have their clinics and medical staff.
In all I think we are giving this article more of a voice then it could have had , or needed. For that reason, I am not sharing the link, I am not reading the article or giving it any more power, press, and shares. The less it is read, the lower the states and the lower the chance of someone else finding it.
We as a community need to take this experience and learn from it, remember there is still so much work to do , so many that still need education , that each of us can help spread the word. To make it our mission to educated one more person and have them educate one more person, adding voices to our goals. The more people who learn and are educated, the less ignorance , the less misinformation will be available.
I say for every share this article has been given , we should share a true fact about pku, a pku website, or fb group, or research story , for our friends and family to see. This is my challenge to you.
I am PKU Strong 