Every 30 minutes a child is born who will develop Mitochondrial Disease by age 10. Approximately 1 in every 4,300 people in the US have mito disease, making it the second most commonly diagnosed, serious genetic disease after cystic fibrosis. Here’s our challenge: Mito is a relatively newly diagnosed disease—with the first pediatric onset case not recognized until the 1980’s. It is greatly under diagnosed and misunderstood, by both patients and doctors. One reason is because the symptoms range from A to Z, and the conditions are commonly misdiagnosed. Mito is a progressive disease and there is no known treatments or cure. Sound gloom and doom? Not so fast — it is an extremely exciting time for genetics right now!! Ground-breaking new capabilities are allowing researchers and scientists to dive deeper into, and analyze, our genome better than ever before. New technology such as CRISPR are giving hope where there once was none. I truly believe that genetic mutations are a HUGE underlying factor in almost all diseases. So, what can we do? ⠀

1.) Educate ourselves. Below are a few resources I have found extremely beneficial. ⠀

2.) Get genetic testing! Request it from your doctor if you have to. It’s a simple blood test. If you or a loved one has “something wrong,” but doctors can’t seem to pin it, get full genome testing. Not only will this possibly give you an answer, but *it will help link other cases together, therefore making movement toward a cure*. ⠀

3.) Donate. Listen to your heart. ⠀

4.) Say a prayer for those little warriors who didn’t ask for this. ⠀

Umdf.org, Mitoaction.org, Cdc.gov/genomics/gtesting/genetic_testing.htm 

 
 

To put it plainly, Mitochondria is what makes our bodies run. Let’s start from the beginning. What is life? A cell. The Unified Cell Theory states that all living things are made up of one or more cells; cells are the basic unit of life and therefore, define it. The human body is made up of roughly 37.2 trillion cells. Mitochondria live inside every cell in your body, excluding red blood cells. They are responsible for producing 90% of energy needed by our body to sustain life. I’m not talking only about running around the neighborhood or walking to the liquor cabinet, but the energy to make our heart pump, our lungs expand, our brain to fire on all cylinders. Our bodies will not function without these little powerhouses. Mitochondrial *disease is a genetic mutation within our cells that affects how the mito functions. But it’s not only a mutation that affects mito. New research suggests mitochondria *dysfunction plays a major factor in aging. “Over a lifetime, our mitochondria slowly suffer inevitable damage from environmental and lifestyle factors and become less effective at producing the energy our organs need to function properly. This dysfunction contributes to aging and is the reason why humans have a finite lifespan." Wow.

Many degenerative conditions linked with mito include diabetes, Parkinson's disease, Alzheimer's disease, cardiovascular disease, and different cancers. ⠀

Research into mito medicine is vital for not only those with genetic mutations, but also millions suffering from other major diseases associated with aging. Sounds like something we should pay a bit more attention to, huh? ⠀

 
 

The word advocate feels so heavy, doesn’t it? How do I do it? Where do I begin? I can’t handle anything else on my plate—especially something people will hold me accountable for. Why me? I’m not smart enough, rich enough. Others are better equipped than I am. ⠀

Bullshit. ⠀

Every person who has ever advocated for something has had those same thoughts and fears. It is the ones who took that first step that made the difference. ⠀

Advocacy is the act of pleading or arguing in favor of something, such as a cause, idea, or policy. It is to actively support something. The key word is *actively. Some advocate to make the world a better place, some have far more personal reasons, but one thing is for certain, nothing will change unless we take action toward our goals. That goes for everything in life. Even small, daily tasks. We have to DO to achieve. ⠀

It is our duty to speak for those who are muted by debilitating diseases like mitochondrial disease. It is our duty to speak for those innocent children who aren’t yet equipped to fight for the cause, and are far from wrapping their little minds around the fact that there is no treatment and no cure for their diagnosis. They need a voice. If not me, who? ⠀

If you want to see change, make noise. Speak up. Spread awareness. ⠀

Where to start? ⠀

Step one: *Understand the change you want. EDUCATE yourself. ⠀

Step two: Know your audience. Know your community. Know who to contact. How? Ask, email, reach out. I’ve included a link on how to contact your elected officials below. Start by donating, organizing fundraisers in your area, making contacts. ⠀

Step three: ACT. ⠀

I believe in us, and I believe in that God-given grit that lives in all of us. Imagine what we could accomplish if we stepped out of our little bubbles every now again. ⠀

 
 

Mitochondrial Disease is no joke. Know what else is no joke? The human spirit. The power of positive thinking is scientifically proven to have a number of health benefits, including a longer life span, lower blood pressure, lower rates of depression, lower rates of obesity, stronger immune system, and even *slower disease progression. Not to mention a better psychological well-being—you’re happier! According to a recent 25-year study, people who had a positive outlook were 1/3 less likely to have a heart attack than those with a negative outlook. One study states that optimists have a 50% lower risk of an early death than pessimists. ⠀

Here’s a bit of science behind it: Every thought we have stimulates the release of neurotransmitters, which transmit information between the cells in your body (37 trillion). ⠀

Psychoneuroimmunology studies how our thoughts and feelings influence our brain and nervous system and examines that link to our immune system. When we have a negative outlook on life, we tend to get stressed out more. This kicks our central nervous system into gear and releases hormones such as adrenaline and cortisol. Not only does this process wreak havoc on our bodies, but these hormones also signal the production of cytokine in our cells, which triggers inflammation in our bodies. This prolonged inflammation causes a slew of health problems (too many to list here). In addition, chronic stress is shown to weaken mitochondria and the way it functions. Not good for the “powerhouse” of the cell. ⠀

The good news is that at any moment, we can change our outlook. Choose to be happy. I’m a big believer that we are so much stronger than we give ourselves credit for. Even in your darkest times, you can *choose to find the light. We are strong. We will find a cure. Mito is no match for the human spirit. And on that note, I say, “Fuck you, Mito.” ⠀