It gets frustrating, and it makes it hard to know whether to go to the pediatrician when a new (or resurfacing) concern comes up, or if you're just supposed to consider the pediatrician an old friend who you knew in the "good old days" but aren't going to cross paths with again.
I've been working on organizing the Energy for Life walk, and thinking about some events we can do leading up to it that would help the community understand the importance of the walk.
I've contacted the largest network of medical facilities/professionals in our state, and hope they'll host a Grand Rounds session as part of Utah's Mitochondrial Disease Awareness Week in September.
Today, I saw an online article, written by a family physician who encourages others in the practice to learn more about mitochondrial disease. These insights from a General Practice doc are spot on. He outlines the importance of education for a disease that is connected to so many other health concerns-- not to mention that it seems to me that mito is really the emerging health issue-- and I think he sums up nicely why a Grand Rounds would be a great thing for the medical community, and the community in general.
Here's some of what I read:
"...medicine requires us to learn constantly if we are not to become fossils ourselves, and many of us can benefit from learning more about mitochondrial disease.
"...the incidence of primary mitochondrial disease is relatively common, affecting up to 1 in 5000 people. Mitochondrial dysfunction secondary to other disease and as a side effect of drugs is even more common, and plays a role in Alzheimer disease and Parkinson disease, as well as the toxicity of some HIV antiviral medications and even the ototoxicity effects of aminoglycosides.
"It is possible, indeed probable, that you have or will have a patient with a mitochondrial disease in your practice. As well as remembering that presentations of mitochondrial disease are myriad and involve multiple organ systems and modes of inheritance, family physicians must remember that individuals within the same family can manifest mitochondrial disease quite differently. The presenting signs may include diabetes, hearing loss, dementia, and arrhythmia—medical concerns in a family history that would inspire few to think immediately about the possibility of mitochondrial disease.
"As our recognition and knowledge of mitochondrial disease increase, we can provide better care to our patients. We can also expect new approaches to diagnosis and management to be built upon the knowledge base considered in this issue."—Gordon B. Hutchinson, MD, CM, PhD, CCFP(EM)
Clinical Assistant Professor, Department of Family Medicine, University of British Columbia
Source BC Medical Journal- Issue: BCMJ, Vol. 53, No. 4, May 2011, page(s) Editorials