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Thursday, June 27, 2013

Mitochondrial Disease, is it even Real?

I am not arguing that the Mitochondria may not work right. Nor am I arguing that there isn't such a disease.

What I cannot help but wonder, who "really" has it? Out of all the patients suspected or with dysfunction of their mitochondria at the end of the day, where does it start and where does it finish?

Often we are reading articles that are connecting, cancer,heart disease, diabetes,autism,hearing loss, parkinson's, pretty much all diseases to the function or poor function of our Mitochondria.

Fair enough, cancer impacts us at a cellular level as do most progressive diseases, so not a reach at all that our Mitochondria are affected.

What came first though, the Chicken or the Egg? Is Mitochondria dysfunction what caused the disease, or the disease that caused the Mitochondria dysfunction??

What triggered it?

Couldn't it be since we know that for the most part all disease processes seem to trigger mitochondria dysfunction that Mitochondrial Disease as we know it for many may just be a symptom not the disease?

When you mention MTHFR mutations to many Drs/Specialists they will roll their eyes, or ignore, or claim there is "no science" that can possibly blame one mutation for the laundry list of diseases that are associated with MTHFR- but wait a minute, isn't that exactly what the mitochondrial disease researchers are doing with our Mitochondria?

Over the past year of all the Mitochondrial Disease patients I chat with or follow, by far the predominance of the patients who have undergone genetic testing- show NO KNOWN disease causing mutation.

Clearly, some of those likely have a mutation somewhere to blame- but do we call it Mito? We did not know about "Mito" until the 90's- isn't it possible that in another 40 years many of the patients who thought it was all Mitochondrial Disease will wake up to find it wasn't that at all? That the researchers will discover something new to blame instead? The older I get the more I realize how very few absolutes there are in life, and especially with our human bodies.

Please do not think I am saying patients with Mito are making it up- I am NOT. Abby is clearly very ill. So are the other patients I know who have been labeled with Mito. Drs as a general rule refuse to believe a patient needs help or is sick unless a laboratory somewhere can say there is something "not normal." Shoot, half the Drs. Abby has seen just refuse to believe Abby has Mito at all despite lab based proof- Why? I have met a lot of smart Drs. who don't believe in most of the Mitochondrial Disease profiles, Why don't they? Maybe they have good reason.

Isn't it at all concerning that Mito,autism, ADD, ADHD went from unknown to 1 in 5 American Children suffering from a chronic and disabling disease and many of those children have Mito,autism,ADHD and other "newer" diseases. How did these diseases that hardly existed in 1980,jump to 1 in 5????

Something is wrong with this picture.

If 1 in 5 children had cancer, our Government would be in a state of absolute frenzy- panic! Even though they now have ways to help children with cancer often go into full remission, where no such treatment exists for all the others.. We would have investigations, teams of CDC officials investigating, National Campaigns to save our children.. Yet, on Mito,Autism, our government is Silent.

Many children diagnosed with Mito or Autism(root cause known or not) won't pay taxes, they are disabled. Won't have careers, they are disabled. They will either have shortened lives like terminal forms of cancer, or be dependent on the government or families for the rest of their lives and our Government is SILENT.

Something stinks. We went from a small group of patients diagnosed with Mito to every disease I can name now being associated with sick Mitochondria..

Which is it?

Call me skeptical, but I don't think Mitochondrial Dysfunction is necessarily the cause for so many of the health issues we see today-I wonder if it just might be a symptom. How long will it take to differentiate between those patients with Mitochondrial dysfunction as a primary disease and those who have Mitochondrial dysfunction which is secondary to another disease process? If you are like Abby, the clock is running, I am not sure she has 40 years to wait around for another discovery to clarify or figure out that there may be something untreated that we could have treated and prevented so much suffering, or something that could be removed from environments that could prevent many more cases...Every day it seems I read another blog of a child dying,a baby dying, an adult.. Mitochondrial Disease is blamed. But what caused it?? What caused the Mitochondrial disease or dysfunction.

No cure until we know the cause.

Everyday we run into the same circular thinking. Why do half the Specialists feel they are done diagnosing Abby when the Depletion was discovered and the other half feel it is wrong- but neither school of thought promotes us to keep searching for the "real" problem. For the few Drs. that we hold Dear that do support our quest to really know and not just treat symptoms they don't know where to send us next.

Why so suddenly are our Mitochondria sick,missing, dysfunctional, deleted, depleted? These little critters have kept us living well since the beginning of time, so why this crash and failure now?

Like being born with only 2 or no wisdom teeth at all is considered an evolutionary marker, could it be that our Mitochondria pooping out is another sign, of some evolutionary change? Some new crazy virus? It seems like the world in general doesn't pay much mind,but to me it feels like a tidal wave, could be because I am watching my child suffer I have a more exaggerated opinion, but even if I had healthy children, I cannot help but wonder about my friend's children who are dropping like flies.

Do we have a self destruct button?

I don't know, and I really do NOT like not knowing.

What is different today that 1 in 5 children(let alone a frightening number of adults) are sick, really really sick. Yet, we have NO CLUE why so many are getting sick? The numbers are rising by the day..

As this epidemic spreads, when will we decide it has spread too far? When will our Government go into intervention mode? Probably when it is their child that becomes a statistic. When it becomes your child. That is what it took for me.

When the Hollywood crowd, the Politicians and the uber wealthy are told their child has Mitochondrial Disease and there is no cure, and no treatment, then it will be a epidemic but not until then.

I think we are screwed- we cannot just sit back and trust that Dr. know's best- they don't. We must push, and push hard.

I won't wait 40 years.

For the last couple years I have waited and waited to hit the point where I could accept there wasn't anything to be done for Abby. As each new symptom happens with Abby I wonder if it is the symptom that will confirm the Depletion is the issue, or the issue that helps us find the disease that caused the depletion. It hasn't happened yet. New symptoms and issues keep showing up in Abby,none make any sense. How I envy anyone who can just have faith, who can just accept this diagnosis and everything that comes with it.

For me I thought getting a diagnosis would answer all the questions. That we would understand Abby better. Unfortunately, it has only opened the door to more questions, harder questions.

What I am realizing, no matter how many patients I talk to, or how many articles I read, I cannot accept this "depletion" answers 18 years of medical questions- I cannot accept it, because it doesn't. There is something else wrecking havoc in her body, and I have to keep looking. Abby agrees. If the Depletion is the "symptom" what is the disease?


Laura said...

I have been reading a new paper, co-authored by Dr. Frye, where they say...
"The interaction between redux homeostasis, inflammation and mitochondrial function is vital to maintaining healthy cell physiology and may be important in disease initiation, progression and treatment. One important unanswered question regarding the metabolic abnormalities is wether one of these metabolic abnormalities is a primary cause of the other abnormalities or wether these abnormalities constitue different subgroups...For instance, as mitochondrial dysfunction is believed to increase oxidative stress...Alternatively, it may be that factors such as environmental toxins induce oxidative stress, which damages mitochondria and result in mito disease."


I think Will was a particpant in this study...

Diane said...

Oh Thank you! A great article and has me thinking back in the right direction...

Very good food for thought! :-)

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