Living with mitochondrial disease

Our Mito Energy soap is back just in time for Mito Awareness Week, September 13 - 19, 2020. We’re empowered to be supporting the work that MitoCanada is doing to bring not only awareness but research and advancements for this disease.

The Mito Energy bar was created last year by Mito Canada and the Penny family. Blaine Penny is the CEO and co-founder of Mito Canada. His son, Evan, was just four when he underwent a routine appendectomy only to come out with an unexplained brain injury that left him quadriplegic due to mitochondrial disease.

The Penny family chose the ingredients in Mito Energy for their energizing scents and properties, in honour of those fighting mitochondrial disease. Energizing Spearmint and stimulating Patchouli blend with Rosemary Essential Oil, which is known for its invigorating properties It‘s revered to stimulate and revive body systems and well-known to protect cells against oxidative damage and encourage cell regeneration.

Learn more about Rocky and MitoCanada.

What is mito?

Mitochondrial disease is complex and affects people in many different ways, but exercise is the best form of therapy for the disease, followed by the “mito cocktail,” a combination of vitamins, cofactors and nutrients.

• Over 5 million Canadians suffer from diseases in which mitochondrial dysfunction is involved.
• There are about 10 million billion (100,000 trillion) mitochondria in an adult human!
• There are over 1,000 genes that can cause mitochondrial disease.
• Mitochondrial disease can be caused by genetic mutations in either mitochondrial DNA (mtDNA) or nuclear DNA (nDNA).

Living with Mito

Marsha’s Story

Since her childhood, Marsha had to work twice as hard to keep up with others. The sports and activities she loved took an unimaginable toll on her body. She often questioned why this was the case but was never able to get the answers she needed until a minor mistake on a lab requisition changed her life forever.

It only takes one meeting with Marsha to be captivated by her infectious smile. Right off the bat, you can feel her dedication and positivity. Marsha has never allowed her shortcomings to limit her will to push forward and always finds creative ways to be a part of the action.

Purely by accident, Marsha’s family doctor checked off “CK” (Creatine Kinase, an enzyme that leaks out of damaged muscle). Marsha’s CK levels were then tested, which proved that her muscles were being destroyed by an abnormality. This sparked Marsha to pursue unanswered questions as to why she was having this problem. Three years and four doctors later, in 2015, Marsha was finally diagnosed with McArdle (a deficiency of muscle phosphorylase, causing fatigue and muscle pain during exercise) and mitochondrial disease.

Marsha was at a charity event for Mitochondrial disease when she stumbled upon a couple of MitoCanada representatives and told them her story. After the event, MitoCanada helped Marsha obtain a referral for a metabolic specialist. Seeing this specialist helped Marsha manage her symptoms and understand what is happening with her muscles.

“Being properly diagnosed has given me peace of mind. Living my whole life without knowing the cause of my symptoms was challenging, now that I know the reason for my symptoms, it is easier to move forward. This has given me a purpose in my life, I want to help the people in my community get the care they deserve.”

Since then, Marsha has been a pillar of the Mitochondrial community. She helps put on numerous fundraising events and always makes herself available to the community. Marsha never loses hope because her efforts and work are justified by the increasing research for Mitochondrial disease. “Get out there and spread the word,” says Marsha.

At the same time, Marsha’s partner Jon is running across Canada virtually in order to raise awareness for Mito. You can follow along on his journey through his diary here and listen to Jon and Marsha share their story through the video below.