WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Wednesday, May 14, 2014

Mito- Is it 1 in 1000 or 1 in 7000?

If you really want to nitpick, mitochondrial "dysfunction" probably occurs more often then 1 in 1000. Depending on which article you read or which Association you visit the statistics are wildly varying. There is a HUGE difference between 1 in 7000 and 1 in 1000.

From medications,toxins, from malnourishment, anorexia, chronic illness.. cancer, heart disease, diabetes..

But for all of those, mito dysfunction can be a "symptom" of another problem. To complicate things there are actual mitochondrial primary disorders that can also be the cause of anorexia, chronic illness, malnourishment, diabetes.. etc.

How do we explain adult onset Mito. Clearly something triggered the Mito disease. A symptom of something else, or a Primary that just needed a certain threshold to become symptomatic?

How many cases of "Primary" Mitochondrial Disease are there? Do we include both nDNA and mtDNA in those numbers? Considering only about 20 percent are genetically identified that leaves a good 70-80 percent of mito patients that are diagnosed via "educated guess", those are the patients that give Drs. heart attacks. Depending on which Specialist you visit, they may see the symptoms indicating Mito or something else.

There are many patients like Abby that have avoided all of the interventions and have gotten through the rough spots. There are plenty that depend heavily on the interventions and make it through.

Sadly there are some who have lost their battle even with all the interventions.

I cannot fathom being a mitochondrial disease researcher. Things appear to be changing daily. Just when I think I am starting to understand, something new comes to my attention that has a ripple effect on everything else I have learned.

Leigh's is no longer an absolute death sentence. Patients are making it well into their 20's with and without a genetic mutation.

A couple years ago if you were a Mito Patient odds are you were very sick. Unable to work, needing assistance, but now Drs are getting more savvy. Many patients who continue to live active lives are being diagnosed with "mito". I talk to patients who are still in school or working. Of course, we know that the symptoms can be very different. Some Mito patients can have days of little to no symptoms when suddenly they crash. During their good days they are well enough to live pretty normal lives.

If you have diabetes that causes the Mito disorder, you treat the diabetes-right?

If you have Mito that caused the diabetes you still treat the diabetes-right?

It is very important to know the difference. From a research standpoint. From a treatment standpoint. From a Prognosis standpoint. From an inheritance standpoint.

So, is your "Mito" a Symptom? Is it the Primary? Are you genetically identified? Are you certain it is Primary Mito? Are you certain it is secondary?

When you see numbers that are anything from 1 in 1000 to 1 in 7000 it kind of makes ya scratch your head and wonder if they are all talking about the same disease.


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