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.

Tuesday, September 16, 2014

Mitochondrial Disease Awareness 2014

Each year that has gone by I have noticed that the population of Mito Patients as well as the information has changed.

This year brings a lot of mito awareness to cancer, heart disease, Huntington's,Autism ,EDS, Mast,and even Gulf War Syndrome.

Unhealthy Mitochondria are tied into a growing list of diseases and disorders.

For quite a few years, it was just the small children who's parents wrote blogs, just the sickest of the Mito population. Now lots of adults are blogging about how "Mito" impacts their lives.

Today, there are far fewer Mito blogs for children(because of the higher risk of CPS "not" understanding Mito, families are encouraged to remove their web presence.)but facebook has become the community. Hundreds of patient parents have "pages" on facebook now. I don't think I could possibly list them all. I am sure over the years that will change too.

Today you will find a lot more adult patients. A harder group in general to diagnosis but also a more hopeful group in general. The prognosis is less likely(though some will be terminal) to be life threatening.

This year brings a little more understanding to the Mito community. Everyone is starting to realize that their "mito" is likely very different then the next. Some go to College full time, some work, some only have to worry when they catch a virus or need other medical care. Some are very severe and need around the clock care. Some like Abby react to what seems like everything.

It is clear there is no "right way". Some children benefit from tubes, some don't. Some families don't mind a tube some do. Some go to public school and some don't. What works for one family doesn't for the next. I think most are realizing now that there is no one size fits all. What works for Abby could be dangerous for the next, and what works for someone else could kill Abby.

One thing that is absolutely clear, this is a disease or disorder that hits far and wide. No matter your income, heritage, values, diet, culture- you need healthy mitochondria.

ALL patients have done a good job spreading awareness- no patient should be made to feel they aren't doing enough, just dealing with the day to day is plenty. In past years there has been a lot peer pressure to donate money or time, and considering it is a disease of energy a lot of folks just cannot. This year is a little better. There is definitely less pressure and stress being distributed on the shoulders of patients- exactly how "support" should be.

Drs on the other hand, aren't all quick learners. If it isn't in their Medical Reference guide, or they weren't taught in medical school, you are still going to run into resistance at least for a few more years.

On one hand, that is good! American medicine has moved along as well as it has because the focus sticks to science, to facts. That type of training is what makes it so clear to me that for Abby and many others there are no absolutes, they haven't found any yet.

On the other hand, they can look at a patient in front of them that is clearly suffering and when the labs are normal they are still telling patients "you are fine.". Hardly.

Lucky for Abby we have found some great Drs. Some patients though won't ever get to see the right Drs. and that saddens me.

Drs are in awkward place right now. They are no long "authoritative". They give advice. Many are glad to work with their patients in a partnership others resent it.

We have seen story after story of Drs. taking control of a child's (a few adults too)life through their hospitals and the courts this past couple years. They feel they have the "right" to force a family to take their "advice". For the most part at the end of the day? Those Drs. have caused more harm then good.

The hero of this year for Mito Awareness is Justina and her family. They spread awareness, in a very big way.. Drs. were FORCED to listen and learn about Mito. CPS and State leaders(federal level too) have been forced to learn about Mito. The cost Justina paid was the loss of her ability to walk. Probably her trust of the medical world has been turned upside down. Her family was tortured. She was tortured.

Many in the Mito community rallied around Justina including MitoAction. Though, there were plenty of patients or families of patients who felt it wasn't their place to "get involved", which shows we have a lot of work to do yet. I feel strongly, that had MitoAction not stood up and vetted her status as a Mito Patient, Justina would still be locked up and being experimented on. MitoAction is the only one who actually supported the patient. Who did not put their reputation or fiscal goals before the suffering of a human being. Patient support should be number one from a Non-Profit Patient organization, right? MitoAction did as they promised, they provided support.

As I type this, there are other families(hundreds over the years across many different diseases) that are being targeted by Drs who don't believe in Mito, or work for Hospitals that seem determined to put their needs as For profit organizations before the needs of the patient.. the fight has just begun.

A long hard year for everyone.

I know my journey as Abby's Mom continues to evolve. No sooner do I think I am helping her on the right path, I find we need to change gears. I continue to struggle with trying to define "mito" in my brain. Like many of the Drs. I find the facts lacking. Unlike the Drs it is clear to me that patients are suffering and some dying and ignoring that, avoiding it won't make it go away. At the same time, treating something we don't understand isn't the best idea either.

What I have learned this year? A lot of focus on cure's and treatment, yet none on prevention.

It has been shocking the number of articles I have collected that show many medications cause mitochondrial dysfunction. That many toxins cause Mitochondrial Dysfunction. Would love to see a list of those slipped in with every Medical School diploma. There are now tests that can be easily tested on new (or old) medications to test for impact on the mitochondria, not required by the FDA(course not). I believe some companies on their own are testing but it isn't enough.

The overwhelming majority of Mito patients have no known gene mutation. Even more interesting is that they are finding perfectly healthy folks with the same disease causing mutations.. which means to me, we don't know squat yet.

A few people diagnosed with Mito(and given a bad prognosis) are now doing great. So hold on to the hope.

Awareness took a huge leap this year, and it continues to be the patients that pay the hefty price for it. Justina,her family and the hundreds of others that are literally being robbed of good health because Mito is still such a mystery, they are paying the hefty price. Each time a Mito Patient see's a Dr. and they they are treated like they are nuts, they are paying the price. Each time a Mito patient gets the wrong treatment, they are paying the price. Each time a mito patient is unable to participate in what they long to do, they are paying the price.

I had hoped by this year we would know "why" or "what" with Abby. Still don't. Still pissed. Still a little crazy. Still fighting.

Still hopeful.

May 2015 be easier on ALL of the Mito Community.


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