M is for Mitochondrial Disease

 

Tomorrow we head to daughter’s 2nd appt with her mitochondrial specialist, to receive ( hopefully) some answers from a very looong wait for DNA test results. No parent wishes to find out something is wrong, genetically or otherwise, with their child, and we are no different, yet we are hopeful that if we should receive news like this, the knowledge will allow us to better support her little system and improve her health. At this point we do not know if our daughter has this condition or not, but I am writing this blog post to raise awareness of this chronic condition and to share the research I have done  in educating myself about it over the past few months. This weekend we will be walking in the Energy for Life walk in Houston with our friends who have 3 boys (and mom) affected with mito (more info below)

Soo you may be asking yourself what is mitochondrial disease (mito for short)?
In the most basic terms- the Mitochondria is the part of your cell that converts sugar from food (glucose) and turns it into energy (ATP- remember that term from biology class!). You can think of the mitochondria as the batteries of your body. In mitochondrial disease this conversion is compromised making this disorder a metabolic malfunction of sorts.
Here is a video that I believe illustrates it in easy to understand terms:

 

The challenge, I have read, with diagnosing mitochondrial disease is that each patient presents differently and almost no two patients have identical symptoms.
This link shows the variety of symptoms that can be experienced with mito.

 

So how does mitochondrial disease affect you if you are a  seemingly healthy adult?
The answer lies in all the research that shows that this little organelle may be responsible for many VERY common disease states such as:


Autism


Parkinson’s disease


Alzheimer’s


Bi-polar disorder


Diabetes

in fact… much of the aging process itself happens when the mitochondria slow down and function less efficiently than before…

 

 

The other thing that I have learned is that many pharmaceuticals, both perscription and over the counter can cause mitochondrial toxicity and damage. This causes some concern, as there is no readily available screening available for you to know as an individual whether or not your genetic make-up may cause you to metabolize a medicine in a way that it may cause toxicity to your mitochondria and your body. It is largely trial and error. Surprisingly ASPIRIN and ACETOMINAPHEN  are two of the medicines listed with mitochondrial toxicity (more on this later!)
Here is a listing and conference call from
mitoaction.org that discusses this topic of medication toxicity.

 

If you would like to learn more about Mitochondrial disease or contribute to the walk on Saturday click here:

OR TEXT YOUR DONATION TO THE UMDF 

You can make a $10 donation to the UMDF simply by texting the word ENERGY to 85944.

 

So off to the doctor we go, on yet another quest for answers. The world of mitochondrial disease is largely still being discovered and researched. My hope is there will one day be a cure for this “for-now”-incurable disease.

About Empowered Advocacy

www.EmpoweredAdvocacy.com Pediatric Patient Advocate
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22 Responses to M is for Mitochondrial Disease

  1. mainlinemom says:

    Praying for you guys tomorrow…

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