Since Invisible Illness Awareness Week was last week (September 12 – 18) and this week is Global Mitochondrial Disease Awareness Week (September 18-24), I thought I would write a post explaining how Mitochondrial Disease affects me personally. So here goes:

I’m a 30 year old, living with childhood-onset, mitochondrial myopathy – one of the 42 diseases covered by the Muscular Dystrophy Association. In fact, it’s the same disease that MDA Goodwill Ambassador, Mattie Stepanek and his 3 siblings died of.

Inside of nearly every cell in your body are tiny organelles called “mitochondria.” These organelles act as “cellular power plants” because they produce more then 90% of your body’s cellular energy. When you eat, mitochondria convert the food into its energy form called adenosine triphosphate or ATP through a process called cellular respiration which occurs in the electron transport chain.  The energy (or ATP) is necessary to sustain life as they provide cellular energy for organ function.

Research shows that if the mitochondria malfunction, it can lead to a number of diseases depending on which cells in the body are affected. Mitochondrial dysfunction plays a role in several neurodegenerative diseases including Alzheimers, Parkinsons, Huntingtons, and Lou Gehrigs disease (ALS – Amyotrophic lateral sclerosis), and studies have shown mitochondrial dysfunction to also be a piece to the puzzle for other conditions including diabetes, some types of cancer, heart disease, blindness, deafness, kidney  & liver disease, stroke, and autism. Mitochondria also play a role in the aging process!

In addition, as many as 2 million American’s suffer from mitochondrial diseases – a group of diseases resulting from gene mutations in the mitochondrial and/or nuclear DNA. When these mutations occur, they can also lead to malfunction along the electron transport chain resulting in cell injury due to insufficient energy from their cellular powerplant (the mitochondria). Cell injury can lead to cell death, and when multiple cells die in one organ, that organ won’t have sufficient energy for functioning. As this happens in multiple organs as the disease progresses, the individual can portray a wide variety of symptoms.


• Every 15 minutes a child is born that will develop mitochondrial disease by age 10.
• It is estimated that of the 4 million children born each year in the United States, up to 4000 develop mitochondrial diseases.
• At least 1 in 200 individuals in the general public have a mitochondrial DNA mutation that may lead to disease.
• There are over 40 identified types of Mitochondrial Diseases and believed to be over 100 variants of mitochondrial diseases, .
• In the United States, more than 50 million adults suffer from diseases in which mitochondrial dysfunction is involved. Mitochondrial dysfunction is found in diseases as diverse as cancer, infertility, diabetes, heart diseases, blindness deafness, kidney disease, liver disease, stroke, migraine, and the toxicity of HIV and other drugs. Mitochondrial dysfunction is also involved in aging and neurodegenerative diseases such as Parkinson and Alzheimer dementia.
• The World Health Organization (WHO) calculates that neurodegenerative diseases, also associated with mitochondrial dysfunction, will become the world’s second leading cause of death by the year 2040.

For me, mitochondrial disease has effected my heart, neurological system, muscles & lungs the most. These organs require the most energy to function, so with insufficent energy it has caused symptoms such as seizures, stroke-like episodes, dysfunction of the autonomic nervous system (which regulates things such as heart rate, blood pressure, body temperature), and  muscle breakdown (myopathy) resulting in me needing to use a wheelchair for mobility and a ventilator due to lung muscle weakness causing pulmonary failure. I also use IV infusions to help stabilize the autonomic nervous system and increase my heart rate & blood pressure.

Of course, holding a ‘normal’ job is difficult when living with a severe disability – especially when you average 12-15 hospitalizations a year for things like heart failure, lungs collapsing, and sepsis (from central line infections) and GI bleeds. So, when I needed to work 40 hours a month to maintain health insurance after marriage, I opened Little Free Radical on etsy! I make stuff as I have the energy, and when I’m sick or in the hospital, I get all the “computer work” done (maintaining my website, editing listings, shopping for supplies, etc). I’ve also brought small tasks with me to the hospital – such as stringing my hang tags! I’ve learned to be sick and productive at the same time between naps! :)

Since there are no real treatments for mitochondrial disease, learning to conserve your energy is key! I’ve learned to balance my energy to not over-exert myself. Very rarely do I make something start to finish in one day. When I feel up to it, I’ll go cut out a bunch of projects, then rest. Another day I might sew some of it. If I get too tired, I complete the sewing on a different day. Then I have a pile of completed products that just need to be stuffed. :)

Naturally, I wanted to make some products for Mitochondrial Disease Awareness Week – products that would initiate conversations! So. these are the products I came up with for Mitochondrial Disease Awareness Week 2011:

This pin is designed to be a conversation starter to give people affected by mitochondrial disease a chance to explain the role of mitochondrial dysfunction with more common diseases such as autism, alzheimer’s, huntington’s, parkinson’s, ALS, diabetes, etc!!! 

 ABOUT THE PIN: This pin measures approx 1.5″ wide by 2.5″ tall. It is made with a piece of green ribbon, the puzzle piece is pewter, and hand-stitched to a pin-back! The edges are finished with fray check to increase the life of your pin and prevent fraying! 
It comes in a cellophane bag, pinned to a sage colored card professionally printed with the following explanation:

FRONT: The green on this ribbon represents energy, and the puzzle piece in the center represents the mitochondria. The role of mitochondria play a key role in many diseases!

BACK: For 2 million people living with mitochondrial disease, it’s the piece to the puzzle that explains the connection between a variety of seemingly unrelated symptoms affecting multiple organs – an underlying defect in mitochondrial metabolism.

Studies have shown underlying mitochondrial dysfunction to also be a piece to the puzzle for up to 20% of individuals with autism. Mitochondrial dysfunction also plays a role in several neurodegenerative diseases including Alzheimer’s, Parkinson’s, Huntington’s, and Lou Gehrigs disease (ALS), as well as diabetes, some types of cancer, heart disease, blindness, deafness, strokes and are also involved in the aging process!

Funding mitochondrial research not only benefits people living with mitochondrial disease, but may also help with treatments and a cure for more then 50 million Americans living with diseases in which mitochondrial dysfunction is involved.

For more info on Mitochondrial Disease, visit”

I also made some headbands with DNA fabric! Green is the color for Mitochondrial Disease Awareness and DNA represents Mitochondrial Disease as a genetic disease! The following sizes are available:

  • Baby – 6-12months: (fits head circumference 43 – 48cm)
  • Toddler – 1-3 years (fits head circumference 47 – 52 cm)
  • Child – 4-7 years (fits head circumference 50 – 55 cm)
  • Adult – 8 years – adult (fits head circumference 53 – 58 cm)
    If we don’t have your size, you can request custom sizing! :)

And last but not least, we have DNA cloth balls available in 4″ and 7″ – great toys for young children & kids with special needs!

A portion of each product sold goes to benefit MitoAction (Mitochondrial Disease Action Committee) – a Boston-based organization dedicated to improving the lives of individuals living with mitochondrial diseases through support, education and advocacy.  So far in the past month, through the sale of these products, I’ve been able to raise over $250 for MitoAction! you can get yours at to help support the cause! :)

But, since it’s mitochondrial disease awareness week, I thought I’d do a GIVEAWAY for 3 lucky winners!

Prizes are:
  • A set of 2 Mitochondria: The Missing Piece Awareness Pins ($10 value) – or –
  • 1 DNA Headband (in the size of your choice) ($12 value)- or –
  • 1 DNA cloth ball set (in the color combo of your choice!) ($16.95 value)

You can enter for your chance to win by entering this giveaway via Rafflecopter. You must open the post for the giveaway widget to appear (click on the post title). Rafflecopter makes entering giveaways super quick and easy!

Mandatory Entry: Tell me in a comment below why Mitochondrial Disease Awareness Week matters to YOU! Additional entries are in the Rafflecopter widget (to improve your chances to win).

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