When Ignorance is Dangerous: The Potentially Lethal Force of "Natural Healing"

Someone very close to me has a rare, incurable, degenerative disease called Friedreich's Ataxia. It is an autosomal recessive genetic condition; consequently, it is determined at conception whether or not the individual will develop FA.  Most children are not diagnosed until puberty as symptoms are rather late to manifest.  Although signs of FA are most noticeable in the neuromuscular system, the disease also has several potentially lethal side effects such as diabetes, scoliosis, and cardiovascular problems (namely, cardiomyopathy and tachycardia).  There is no cure, although there are many medical treatments available to help mitigate symptoms, slow progression, and alleviate suffering.

Because this is an issue close to my heart, I have read extensively on FA.  Consequently, I am fairly well-versed on the medical details of the disease; however, I fully admit that my understanding is often rather crude as I have had very little formal scientific education.  Regardless of my incomplete comprehension, I was still shocked by the blatant lies and dangerous advice promoted by this video that I stumbled across while surfing through YouTube:

Raw Food Detox Diet * Natural Healing from Friedreich's Ataxia ❤

I was horrified.  This man is actively discouraging parents from seeking medical care for the treatment of FA.  All I could imagine was a distraught parent returning home from the doctor's office after receiving this heartwrenching diagnosis for their child.  I could see this mom or dad scanning the internet, desperately searching for an answer or some measure of hope.  I then imagine this desperate parent finding this asshole's YouTube proclamation that fucking raw fruit and herbs will magically cure their child's irreversible genetic condition.

Of course, I had to comment.  However, I was careful to keep my comment respectful--as much as it killed me to show any sort of respect to this man--as I knew that any show of aggression on my part would only be painted as an operant of Big Bad Pharma.  This is my initial comment:

Why are you recommending a high-fruit diet for FA patients? Diabetes is a common complication of the disease; promoting a diet heavy in fructose seems irresponsible at best. Also, I hope that you encourage your friend and others to still seek medical attention and be regularly monitored for signs of cardiomyopathy and tachycardia. A whole-food diet may mitigate symptoms of FA, but it is incredibly irresponsible and cruel to promote false hope that somehow a raw diet will provide a cure.

To which he responded with this comment:

liferegenerator (uploader)@shine7157
If you have a disease just get healthy, it is so simple! For all the people who have eliminated this disease with a raw diet it was responsible and loving to promote this hope! Please get with the times! Diseases make money and health does not that is why you have been programmed to believe that something like this cannot be eliminated but I assure you if you eliminate the obstructions to the flow of life energy you will regain your health! So simple! So easy...Fasting/Raw foods

Apparently, he did not feel that his message had been properly delivered and proceeded to comment on my YouTube channel as well.  On a side note, I have my T|A profile listed as my homepage; as a result, he learned that I am an atheist and decided to include that in his response as well.  Here are the two comments left on my YouTube channel:

(22 hours ago)

Oh no wonder, another atheist trapped in the intellect! Disregard my last comment! Without faith in the infinite power you won't get well...Sorry! :(

(22 hours ago)

I read your website! I am sorry! I wish I could help you find the real Love of God! In your heart you know it is real! Allow it back into your life! :)

(Oh yes, apparently it is not the lack of FRUIT in my loved one's life but the lack of GOD that is allowing FA to continue its progression.  Sigh.)

Anyways, of course I had to respond with the following:

Apparently, your ten minutes of internet research have left you woefully uninformed about the full impact of Friedreich's Ataxia.  Your ignorance is clearly evidenced by your gross oversimplification of the disease.
By actively discouraging medical treatment, you are potentially contributing to worsened suffering and an earlier death caused by this condition.  Following your advice would only exacerbate the misery of FA.
FA is not simply a "nerve disease;" it is caused by an autosomal recessive genetic condition. Although the neuromuscular system displays the most noticeable symptoms, the disease has several potentially lethal consequences.  Patients must be closely monitored for the development of scoliosis, diabetes, and cardiovascular complications (namely, cardiomyopathy and tachycardia).  By dismissing this as some condition fabricated by Big Pharma and actively promoting the use of raw foods and herbs as the PRIMARY means of coping with this disease, you are wielding your ignorance as a dangerous force.
Also, you claim that I should recognize "all the people" who have been cured by following your nutritional plan.  Show me ONE documented case of a patient with diagnosed FA who has recovered from following a raw food diet and omitting conventional medical care.  You have no idea what it is like to watch someone whom you love deal with this.  Regardless of how entrenched you are in your own egoism, you are still fundamentally ignorant of the full spectrum of physical, psychological, and emotional problems incurred by victims of this disease.

I strongly urge you to either amend or remove this video.  Good nutrition is an indispensable part of mitigating the symptoms of any disease, but it is by no means a magical panacea for Friedreich's Ataxia.  Although your intentions may be good, please be aware that you are actually only making the situation worse.  Promote a good diet in conjuction with medical treatment, but to actively discredit the necessity of medical care in treating FA is unconscionable.


I really cannot express how angry this video makes me.  I know just how difficult FA can be even with all possible medical treatments and therapies.  I cannot bear to imagine a child--or anyone--forced to deal with the misery of this disease with nothing but a fucking wheat-grass shake and plate of raw fruit as treatment.

(Edit: Either YouTube is really screwed up, or this man has deleted most of my comments and blocked me from leaving further comments on the preceding video. In my opinion, his censorship of opposing opinions just proves that he knows he is wrong yet remains insistent upon deliberately promoting misinformation. He is now aware of the harm he is potentially causing and continues with his actions regardless.)

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He's basically saying that with the right diet the body can heal any disease. It's not so much about Friedreich's Ataxia since it's clear he has no idea what that is and he'd undoubtedly give the same little speech for any disease.

The video is so outrageous it could pass as a satire under the right circumstances... "Within 10minutes of research on line I already got the gist of it."
I agree, Michael, that his ignorance is directed at all sorts of medical conditions. I have been thinking about this a lot over the past week, and I have decided that I'm definitely going to try and get a video made exposing his ignorance. Someone is going to get hurt and suffer unnecessarily by following his advice, whether for FA or some other serious medical condition.
Shine, first of all I am sorry to hear that this ailment effects some one close to you. I was unaware of this particular medical condition before reading this, however, I have seen many quakes where I come from and have even seen people suffer and loose life because of them. So I know it is extremely important to take such idiots down where ever one finds them and by all means necessary!!
Thanks, QM. It's a pretty rare condition; only about 50,000 people in the US have it (I'm unsure about the worldwide number).

He definitely needs to be exposed as a quack before someone gets hurt. I mean, I don't care if he thinks raw food is the greatest thing ever and wants to promote his herbal "remedies." But when he starts actively discouraging medical care for serious illnesses, he crosses the line and needs to exposed.
Yes, that is the whole point. I don't think anyone is going to disagree that eating better is a great thing, but him saying get healthy and you'll be all better is the dangerous part. Good on you for really sticking to your guns and actually doing something about it! Can't wait to see the video.
I considered flagging the video as inappropriate, but I'm not sure if that would do any good.
Thanks, Johnny! :)
I was inspired to speak up after reading your post, and I seem to have an invitation to post opposing views on his video. Please take a look and provide me with some informative/consciousness raising facts to respond with.
Here is the correspondence:

My comment-
"There is great research and treatment being done today that is relieving a lot of suffering and providing a high quality of life for so many with this condition. I know if you had this information you would not be discouraging laypeople from getting care from the experts. Please let me help. If you are interested I would be happy to research the issue with you so that you can revise this video and provide better information with better advise."

liferegenerator's comment-
@beelzabubb Please share with me what you have learned; I would be grateful. Thank you... Love, Dan
Wow, I'm literally shocked that he did not delete your comment; I know of at least a dozen dissenting comments which have been deleted. And some of them were perfectly polite! I'm glad that he now at least appears willing to examine evidence, although I am afraid that he will still find a way to chalk it up to a "Big Pharma" conspiracy. But I'll try not to be too judgmental and at least holdout hope that he will listen.

The main research organization for Friedreich's Ataxia is FARA (Friedreich's Ataxia Research Alliance). In hopes of legitimizing a presentation of this organization, here is a list of FARA leadership, here is a list of scientific advisors, and here is a list of partner sites. As you can see, there is no overt presence of the pharmaceutical or healthcare industry; right away, this should help to deflate the trite criticism that FA is just a fabricated condition used by the two aforementioned industries to make money.

Here is a basic overview of FA:
What is Friedreich's Ataxia?

Here is a list of all the current scientific research and discoveries concerning FA:
Research and Clinical Programs: Scientific News

Here is a graph of the progress of various treatment currently in trial right now:

(Image available here along with a quick description of each different drug currently being tested.)

Just last week, we got the exciting news that a new drug had been approved for Phase I clinical trials. It is an HDAC-3 inhibitor which is supposed to somehow address the genetic inability to produce frataxin; somehow, the transfer across the blood-brain barrier is involved. (I think that this is the first drug which has been able to successfully cross this barrier.) However, my knowledge of anatomy and physiology is woefully incomplete and I am afraid that I may have completely mangled that description of the drug. Here is a PDF of the press release:
Repligen Files Investigational New Drug Application with FDA for First Drug Targeting the Core Genetic Defect of Friedreich’s Ataxia

Thanks for speaking up, Ruben! I sincerely hope that this man listens and removes his dangerous video.


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