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.

Thursday, September 12, 2013

Mitochondrial Disease Awareness Week September 15-21





Next week is the annual awareness week.


If you would tell just 1 person about Mito, you will have contributed more then you will ever know.


Everyday, Mito Patients are booking appointments with new Drs, who have either never heard of Mito, or have a very very limited understanding of Mito.


More then once, we have had Drs. question Abby's diagnosis. She is simply too healthy to have such a terrible diagnosis as a depletion. They seem so puzzled,I understand, because I have really doubted the the diagnosis myself. Whether primary or secondary, it was found, it is there, and it is causing problems. I am sure I am not alone in wanting to scratch the eye's out of the next Dr. or Nurse who suggests Abby needs to simply push herself harder and she would fine.. To me, that means the Drs, the ones who are supposed to know this stuff, are ignorant about this disease. Some don't wanna know, I get it they are busy. Some don't believe it. Some feel that the 2 hours they spent on it in medical school 20 years ago means they know more then I do.



How do we get Drs to understand the growing diversity in Mitochondrial Disease presentation?

I will always remember Abby seeing a student at the Nephrologists office in the Med Center in Houston. This was the one system that is known for their Mito Specialist by the way... He lectured us on that we are caring for Abby wrong. He said, if it was Mito she would really be sick, and disabled, so no way could it be Mito. We needed to push her. He told us he was sickly as a child and his family pushed him, and look at him, he was going to be a Dr. .. No joke. Mito patients face these type of Drs. weekly, monthly, yearly. They are told that somehow it is mind over matter- if they WANTED to be better, they could be. In the year 2011 that is what the Medical Students were still learning and how they are still allowed to treat patients.. I always hoped that particular student went into research and far far away from patients.. But, based on the horror stories I hear about Mito Patients being treated badly, he is out there somewhere telling patients that Mito is all in their head and to just get over it.


Each day they are finding how many diseases are impacted by our Mitochondria. Cancer,diabetes, heart disease, Parkinson's,and Mast to name a few.

So wouldn't those specialists in those fields want to know everything about the disease they specialize in? If understanding the mitochondria and the impact on their focus lead to gains by their patients?

So it takes time, I get it.

I don't have time. Abby doesn't have time. We are not going to wait around until your Associations decide it is time for you to learn about Mitochondrial Disease. Ya'll need to get your act together. Enough.

Today, another child, adult will be diagnosed with Mito. They will be turned over to their local Drs. for care. They will be shocked and dismayed when their local Drs, don't know what Mito is, question the diagnosis, and ignore the warnings and orders of Mitochondrial Disease Specialist- even worse then all that? If the patient tries to advocate for themselves they will be ignored, minimized and often told they are wrong. After all they are just the patient. Heck, even with Mitochondrial Specialists, Mito Patients struggle to advocate for themselves. Not all Mito Specialists are good at what they do.

Without spending a penny, without even donating any time you can bring awareness. Tell your family Dr about a story you read about Mito. Tell your dental hygienist while you wait for the Dentist to come in, tell your OB/Gyn while you are getting your annual Pap..Talking about Mitochondrial Disease and all of it's quirks,odd presentations and suffering, is the best way to bring Awareness.


We cannot find the CAUSE of Mito if no one knows what Mito is.. We cannot find cures for Mito if no one recognizes that Mito exists. We cannot PREVENT Mito if no one wants to learn.


"Talk is Cheap" Well, it is cheap both on energy and the pocketbook.


You don't have to spend money. You don't have to spend energy at a rally,walk or presentation. Most Mito patients are often short on cash and energy! It is a bit of a running joke in our house that the Mito Associations do a Walk to raise money and awareness, Abby is lucky some days to have the energy to brush her teeth, let alone get it together to show up, socialize and walk..Ironic right? We have found that as an alternative, Talk is Cheap.


My favorite method to spread awareness is to send an outrageous amount of emails out. I write to Drs. with Blogs, I write to patients with blogs, I write to Congressmen, Senators, Manufacturers, news stations, magazine editors if I notice an email on any website I stumble across I send an email.. I am CERTAIN I come across as a little whacky, and I don't care. I figure they see my email and likely hit delete before they read it, but I also figure that maybe 1 out of 100 of the emails that I send might actually be read by an intern, or a secretary before it is deleted-so I have won, one more person has heard about Mito. I am not waiting anymore until someone or some association or the power that be decides it is time to talk about Mito and address that it is rapidly becoming a common and not rare disease.

My awareness week will entail a lot of emails. What are you planning to do?













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