I have the honor of sitting in on a Mitochondrial Support Group every week. I don’t have mitochondrial disease but I have lived with the impact on my family for 15 years. I love this group; it’s honesty, it’s camaraderie. Most of the people who call in are adults with Mito; a very under-served and under-recognized population.
This is a smart group of adults advocating for the best care for a complex disease. I have heard many times that Mito challenges our approach to health care. This group gives a name, a face and a voice to those challenges.
Our lovely, beautiful mitochondria live in our organ and muscle cells. When there is a breakdown in mitochondrial function, the breakdown is system-wide. The brain, the tummy, the heart, the eyes, nerves, muscles…..all are impacted.
And yet, when a Mito patient sees many specialists, for their many issues, that specialist is just focusing on a certain organ system, instead of how the entire body is reacting to this breakdown in energy.
Samantha never cut teeth. In her four years of life, she had two tiny nubs of bottom baby teeth. This never bothered me. She was tube fed, she never had solid foods and I figured her tiny, energy deprived body needed to keep the brain or heart happy. Teeth were a non-issue in our book.
Teeth were a non-issue until we saw dentist. Dentist focus on…..teeth. He proposed that we sedate our toothless beauty, cut into her gums and pull those elusive baby teeth down.
“But why?” I asked.
“Because she doesn’t have teeth.”
“But she doesn’t need them.”
Never tell a dentist someone doesn’t need teeth. It. Rocks. Their. World.
In the end we agreed that sedation for a mito kiddo just to pull down some choppers was a silly idea. To the Dentists’ credit, he is concerned about teeth. When he choose a specialty, they never discussed issues that might impact the entire body…..including teeth.
When discussing this issue today, someone on the call said, “My cardiologist doesn’t care about my migraines.”
The statement was so profound and so true and so dangerous in the world of mitochondria. We have a silo’d medical system where the cardiologist doesn’t really talk to the neurologist, or the pulmonologist, or the gastroenterologist, or the dentist.
This summer I sat in on the UMDF Scientific Conference. The key note speaker open the session by saying; “We can no longer think Anatomy, we have to think energy.”
I loved this statement and agree with it 100%. And since migraines can be a vascular issue and are related to heart disease and stroke, maybe we should care about the relationship between the two.
This is not to criticize the medical community. Doctors, PA’s, nurses and their teams are doing the best they can with limited time. But after hearing this smart group of advocates, trying to be champions, managers and coordinators of their care, we need to rethink clinical care for complex, multi-system issues.
Otherwise we are just pulling teeth.