This past year or two I know the Mito Community has been alarmed by the number of Mito Specialists stepping away from patient care, or some only willing to see patients who have a known genetic mutation, or those are scaling back to see patients just in their wheelhouse. Patients were justifiably panicked. They were angry, disappointed, scared, and feelings of abandonment. Over the past 3-4 years I cannot count the number of families who were accused of child abuse simply because their child had a disease the hospital systems and medical schools hadn't figured out yet. With so few Mito Specialists out there it didn't help these families much. There was no literacy and just a few Specialists that even understood the word "Mito" and it's complex definition.
Four years ago when I first started reading research articles and googling there were only about 10 names involved in Mito Medicine. Today in just 4 years I could not even begin to count the number of Dr. names represented in the endless stream of Mitochondrial research and care.
As the original Mito Specialists have stepped away from patients, there has been a flood of new patient care Drs. These Drs. aren't "Mito Specialists" but they are Drs who attend extended learning. Drs. who read. Drs. who google. Drs. who are capable of caring for most Mito Patients.
From Rheumatologists who have dealt with mystery patients their entire career to Functional Medicine Drs and for that matter many holistic Practice Drs. They are doing a remarkable job filling the void. If you have a Dr. that cares,listens and is willing to individualize medicine you might just have a very good Mito friendly Dr.
I often compare the flood of Mito Patients to the floods of Chronic fatigue and Lupus patients in the 80's and 90's. Or the Lyme patients today. It took years but today these patients have options for Drs. who take them seriously in communities across the Country. Sometimes that was a nutritionist, sometimes a family Dr. or even Immunologists and Rheumatologists. These patients are receiving much better care today because care is accessible. Most importantly though, the knowledge of these diseases has blossomed across all medical specialities.
Another interesting thing that happens when more Drs. step up to care for a unique group of patients is that new discoveries are found. New treatments, new avenues, new support. Based on a Drs. experience and background they have a different views from a clinical standpoint.
These new Drs bring new ideas.
For a disease with no cure, with extreme individual symptoms, with no specific treatments we NEED brainstorming! We need that Chiropractor, that MAPS Dr, that Rheumy, that Immunologist, that functional Med Dr, that holistic Med Dr, that Family Dr, etc. They are the ones that will be hands on with patients moving forward.
Those original Mito Specialists are still around even if retired from patient care. Their original findings will likely change and no longer be the standard but because of them we learn more because they are the ones who planted the seeds. As they retire, step back, move away from patient care, patients will find new care and better care because of those original Mito Specialists.
If you have read my blog you know I feel the majority of Mitochondrial Disease is ManMade. The zillion medications(70 percent of Americans take prescriptions daily! GASP!!! ) , the chemicals in our food, in our lives. We mean well but it isn't ending well. The study of Epigenetics, the study of our Microbiome, and methylation are providing answers finally.
In 10 years our children may see a "Epigenetics Specialist" instead of a "Mito Specialist." Or how about a " Microbiome Specialist?" It is coming. We must thank our Mito Specialists for this huge new world of medicine opening up.. for providing the open door to a massive leap in the right direction for understanding the human body. Knowledge always(eventually)translates to better patient care.
Our Mito Specialists did good. We thank them! They planted the seeds and now the rest of the Medical Professionals get to water and weed and hopefully harvest that knowledge to prevent and cure Mito.
So welcome Mito Literate Drs! We are glad to have you onboard. Our hopes now lie with you.