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What You Need to Know About Mitochondrial Disease

New to the world of mitochondrial disease (“mito” for short)? Continue reading for key facts and figures about what this disease is, its symptoms, and how it works.  

  • It is estimated that one in every 5,000 individuals have mitochondrial disease — a chronic, and typically genetic disorder that occurs when the mitochondria cannot produce enough energy (ATP) to keep the cell alive and healthy (NCBI).   
  • Mitochondrial disease is classified as both rare and progressive. 
  • It is also considered a metabolic disorder – meaning that the body cannot effectively turn food into energy and get rid of waste. 
  • Iarguably isn’t a single disease but more like a collection of conditions that can negatively impact a person’s perception, motor skills, organ function, and energy over time. 
  • Symptoms of mitochondrial diseases depend on which cells of the body are affected. They can range from mild to severe, involve one or more organs, and can occur at any age. Even patients within the same family who have the same mitochondrial disease can have differences in symptoms, severity, and age of onset (Cleveland Clinic) 
  • Symptoms may include:  
    • Muscle weakness or muscle pain 
    • Movement disorders 
    • Neurological problems
    • Vision and/or hearing problems 
    • Learning disabilities 
    • Unexplained vomiting, cramping, reflux 
    • Increased risk of infection 
    • Thyroid problems 
    • Respiratory (breathing) problems 
    • Dementia
  • With the number and type of symptoms and organ systems involved, mitochondrial diseases are often mistaken for other, more common, diseases (Cleveland Clinic). 
  • Here is a list of symptoms that are associated with specific organs that are affected by mito. 
  • Mitochondrial Disease should be suspected when three or more organ systems are involved (UMDF). 
  • Having mito can be like having a cell phone that is very close to running out of battery. Some apps may run for just a short amount of time before the phone turns off completely. 
  • Mitochondrial disorders are typically caused by mutations (acquired or inherited) in mitochondrial DNA (mtDNA). Mitochondrial dysfunction may also be acquired as a result of drug use, infections, or other environmental causes (NIH). 
  • The first pathogenic mutation in mitochondrial DNA was identified in 1988. There have since been 275 other disease-causing mutations identified (National Academy of Sciences). 
  • Mito is very difficult to diagnose because it’s often invisible. It can take over 7 years to reach a proper diagnosis (Mito Action). 
  • Mitochondria are known as the “powerhouse of the cell”, and they are responsible for producing about 90% of cellular energy. 
  • When a cell requires more energy, the mitochondria inside of that cell can reproduce by growing larger, and then dividing themselves. When cells require less energy, mitochondria can become dormant and inactive. Mitochondria can also die due to lack of use. 
  • There are secondary illnesses that have been linked to mitochondrial diseases, including: 
    • Diabetes 
    • Autism 
    • Parkinson’s disease 
    • Alzheimer’s disease 
    • Heart, liver, or kidney diseases 
  • Your mitochondria become weaker and decline in number as you age. Ultimately, all the things we associate with aging – fatigue, excess fat, and a decrease in muscle mass and cognitive ability – are all symptoms of weakening mitochondria (Bulletproof). 
  • There are currently no known cures for mitochondrial disease. 
  • Supportive therapy is one treatment option that can be used to help delay the progression of mitochondrial dysfunction. This therapy may include nutritional management, exercise and/or vitamin or amino acid supplements. 
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From Trend to Medical Paradigm: Biohacking for Answers

Written by Chloe Weber L.Ac, MSOM, Co-Founder and CEO of Radical Roots and more importantly, Remy’s Mom.

“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” – Margaret Mead

More Than A Movement

I’ve been biohacking my son since before I knew “biohacking” was more than Bulletproof coffee and silly glasses.  As an acupuncturist and herbalist, I didn’t bat an eye when the geneticist told me that my child had a neurotransmitter disorder that only occurs in one out of every 20 million people.  I stared at the doctor as he told me that my son would likely have intractable seizures, intellectual disability, Parkinson’s-like tremors, ataxia and apraxia . . . As he told me, “There’s not much research, I printed two studies—but I didn’t get to read them yet.”  I looked him in the eye as he annihilated a lifetime of dreams of soccer games and sharing books, of surfing adventures and herb talks. I glared at the doctor, terrified and defiant, because no one will ever tell me what my son is capable of, because Remy’s tale is just beginning to unfold.

What most families don’t know is that there is a whole world of medicine that exists outside of the current medical paradigm; that there is help and hope.

Biohacking has turned from a trend to a movement, and now we need to use that movement to help the most vulnerable and desperate population of our society.  Neuro-developmental disorders are crippling our families, disabling our children and putting incredible stress on our medical and education systems. With the incidence of autism increasing at exponential rates and other developmental and neurological disorders becoming more and more prevalent, it is essential that we find help for these families immediately.  We need to protect further generations from the harm and help address the terrifying fertility issues at hand.

Western medicine, Western lifestyle, and diet are hurting our children.  EMFs, toxins, horrific nutrition, genetic mutations, poor digestion, disrupted microbiomes, disrupted hormones, food allergies—our children are the canaries in the coal mine and they are suffering.  Families of children with special needs are desperate for help, while the medicine and the support systems are epically failing them. Isolated and scared, parents are left studying day and night hoping to find help, hoping for answers; while fighting for support and services during the day.  

What these parents don’t realize is that most of the therapies their children receive are highly outdated and ineffective.  For an entire year I spent 40 hours a week doing “typical” therapy with my son with negligible results.  What most parents do not realize is that the most important changes they can make are in their own kitchen. Even fewer consider the ramifications of EMF on a developing brain, or glyphosate on the mitochondria.  Parents are so scared and overwhelmed that they become paralyzed.

From tiger mom to the mother-f*cking warrior of all warrior moms.  

I didn’t bat an eye when the doctor broke the news.  I turned toward his assistant and told her to print out every-single-study she could find while I went to call Remy’s acupuncturist. I didn’t break down.  I didn’t give up. I have been able to push forward because I know what so many families don’t—that the brain is plastic.  That given the right support and the right therapies, the brain can and WILL change.

I don’t know what lies ahead for Remy, I don’t know what he will achieve, but I will always love him for exactly who he is, while I fight to push him further.

I take Remy to a neurologist in Ecuador for a month twice a year.  The doctor treats him with hyperbaric oxygen, ozone therapy, alpha brainwave stimulation, low-level lasers and other bioenergetic medical techniques.  He’s a Cuban doctor who studied in Russia. He’s brilliant and he does things Western doctors couldn’t imagine let alone comprehend. His practice is based on balancing brainwaves.  During our first trip, Remy’s brain map showed that is brain was at 76% delta—76% delta!! My child was in transcendental meditation; he was not even in this realm.

I also take Remy to The Family Hope Center in Philadelphia.  Their program empowers parents to become their child’s therapist, to become their child’s greatest advocate, to support their biology, and challenge their neurology so that they can create new neural pathways.  They use diet, supplements, functional movement (crawling and creeping), smells, reflex integration (and more) to challenge a child’s prognosis. They are phenomenal, and they are changing the lives of children struggling with all sorts of neurological challenges.

Where to Start

The heart of every comprehensive program for neurological health includes: nutrition, detoxification, oxygen, movement and supplementation (and nutrigenomics).  These are all the fundamentals of biohacking as well.

The gut and the diet are the first place to start for any neurological disorder.  Decades of research show how effective the keto diet is for mitigating seizures.  Now research is beginning to explain some of the biomechanics that makes that possible.  In fact, current studies are showing that a particular strain of bacteria that is propagated by the keto diet is also enhanced by CBD supplementation.  This bacteria has been proposed to positively affect not only epilepsy but multiple sclerosis.  Other research clearly shows how a simple elimination diet can be used to alleviate the symptoms of ADHD.  What if all children with special needs were offered a gut test like Viome so they can optimize their health?  What could the brains behind BiOptomizers do with the research from those tests?

Environmental and electromagnetic toxicity is impacting all of us, but our children are by far the most affected.  Many children get their first iPad before they are 3, and classrooms are filled with cell phones and WiFi.  Water is often tainted with lead and glyphosate, and one of the first foods that children typically eat is arsenic-tainted rice cereal.  The impact of these toxins on developing brains and bodies is now being seen and slowly understood—but the evidence is clear—we have an epidemic on our hands.

Oxygen For Brain Health

Oxygen is tricky to administer, but essential for neurological health.  Hyperbarics have been studied for numerous neurological disorders and many people have found incredible success using them.  Family Hope Center also uses Carbogen and reflex bags in their treatment protocols. (The “bags” are specially made for you to breathe into for 30 seconds until the carbon dioxide signals for the brain to uptake more oxygen.  Remy loves them, but obviously this needs to be done with supervision and know-how.) Finding out how to use oxygen therapy for developmental disorders is essential. The doctor we see insists on using the chamber before doing neurofeedback, but there are so many variables.  Photobiomodulation is another interesting option. I just ordered Remy a VieLight 810 this morning. If the brain develops from the bottom up, and the most injured children have problems in their midbrain and pons, then intranasal photobiomodulation seems like a very reasonable method of stimulation and healing to try.  

When you have poor proprioceptive awareness, it’s so hard to know where your body ends and where the world begins. Mind/body awareness therapies such as the Anat Baniel Method and the Feldenkrais Method are remarkable for children with developmental disorders.  Yoga and tai chi have been shown to help with balance and awareness, support motor planning, and promote calmness. What else can we do to stimulate the body to change the brain? What tools do we have to help the children learn to be more aware, to gain more strength and independence?  

And Last, Supplementation.

So much research is coming out on nutrigenomics — information on how our genetics and our lifestyle affect our ability to function.  Children with special needs have notoriously bad GI tracts, difficulty absorbing and processing nutrients, and often have improperly functioning detoxification pathways. Why aren’t doctors looking at their labs tests and testing for nutritional deficiencies, for hormonal fluctuations?  Surely every child with special needs should have their genes run for maladaptive SNPs and mutations?

As a community, we have some of the most curious and progressive minds in medicine, and we have innovative thinkers who are pushing themselves to be better in every way in order to make a greater impact and find more joy.  You all inspire me with your brilliance and drive. I beg of you, help me help these children. Help me help these parents — these parents who give all that they have to care for their children; who give up their own health to work extra jobs; who give up their sleep to nervously watch their seizing children; who give any time they have to fight for appropriate support for their kids.  I can tell you first-hand how exhausting, terrifying and lonely it is. The bureaucracy is never-ending and the daily struggle to manage your pain and fears is exhausting.

It breaks my heart to see these parents, locked in fear and misery.  So many special needs parents suffer with PTSD. So many are not able to make the right food choices, or find space for meditation and gratitude let alone exercise and play.

But What If They Could?

I am an independent mama to a child with multiple disabilities. I run a private practice and a CBD/Chinese herb company. I am actively fighting to improve the lives of others.  I have two cats and one dog. I love my life and I am so grateful for all I have and even more grateful for my perfect son. I could not do what I do without biohacking.  

I cannot tell you how much this community needs us.  Needs the very best that biohacking has to offer. I have seen what is possible for these children.  I have seen kids who had hundreds of seizures a day stop seizing altogether. Speechless children start talking.  I have seen my son, now almost five, take his first independent steps just two months ago. Every inch is a mile, and every single one helps these children gain more independence, find more joy and find more connectivity with this (sick and twisted) beautiful world. 

Please, help me help them.  Help us.