September is Mitochondrial Disease Awareness Month and you might find yourself wondering “What exactly is Mitochondrial Disease and what can I do to help?” If you are one of those people, don’t worry, I am here to help!
Mitochondrial Diseases are a group of genetic disorders that occur when the mitochondria (the part of the cell responsible for producing 90% of the energy needed to sustain life) fail to produce enough energy for the cell to function properly. This causes cell injury, and eventually cell death. Since the mitochondria are found in every cell in the body (with the exception of red blood cells), mitochondrial disorders cause a wide range of symptoms. This often sends mito patients on a long and complex diagnostic odyssey while desperately struggling to manage their symptoms. Mitochondrial diseases are progressive and there is currently no cure.
Mitochondrial Disease awareness is so important because we need better treatments!!! The first Mitochondrial Disease was only discovered in 1988 so mitochondrial medicine is still a relatively new field. Research is expensive and rare diseases do not get the funding that they truly need. Another reason we need awareness is because it’s far too common for mitochondrial disease patients to not receive proper care, despite desperately needing it. It often takes years to be correctly diagnosed with mitochondrial disease, and when finally diagnosed, we often struggle to find physicians that know how to treat us. We need awareness because we shouldn’t have to travel 100+ miles for proper treatment!
Here are 5 ways you can make a difference this Mitochondrial Disease Awareness Month:
Wear a green ribbon. It is a really simple way to bring awareness to a cause, but it works! When I wear my green ribbon during awareness month, tons of people always ask me about it. Also, know how to pronounce Mitochondrial Disease for when people ask. Rocking a ribbon only brings awareness if you can actually pronounce the name of the disease it represents!
Educate yourself on Mitochondrial Disease. Some great resources to learn about Mitochondrial Disease include the UMDF and Mito Action
Donate to a Mitochondrial Disease organization. Some great foundations to donate to include UMDF, Mito Action, and The Lily Foundation (UK). I have been volunteering with the UMDF for almost 5 years now as a support ambassador, so I might be a little biased. The support group communities the UMDF provides have touched me in ways I can’t put into words and the educational events they run have helped me to better understand the disease I live with. The UMDF mission is to “Promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families.” I believe the UMDF is doing an amazing job fulfilling that mission
Share awareness posts on social media. I know that seeing a ton of awareness posts can become overwhelming, but social media posts really do go a long way when it comes to awareness. Make sure to share quality posts with reliable information, not just pictures of green ribbons!
Host a fundraiser/ Participate in an Energy for Life Walk. Celebrate Mitochondrial Disease Awareness Month by creating a Facebook fundraiser for any of the foundations mentioned above or put together an Energy for Life Walk team and help the UMDF fund much needed research.
Let’s make this Mitochondrial Disease Awareness Month a great one!