I have been reading about Dr. Max Gerson, a remarkable doctor who devoted his life to refining a diet therapy which focused on healing the entire body rather than specific conditions.  Gerson lived during the mid 1900s and fled Nazi Germany to survive and develop his alternative approach to treating disease.  His diet regimens are quite specific and difficult to follow, but yet the evidence of their success is unquestioned based on the accounts of his patients.  The Gerson therapy targets degenerative diseases such as cancer, heart and circulatory disease, diabetes, and multiple sclerosis.  Despite the success of his dietary approach, Gerson has been forgotten and ignored by the medical establishment.  The Gerson approach is controversial and the American Cancer Society and the US National Cancer Institute, do not recommend the use of the therapy, warning that patients should not turn away from mainstream therapy.  During his life Gerson attracted the friendship of Nobel prize winner Albert Schweitzer, the famed medical missionary, by curing Schweitzer’s wife of lung tuberculosis after all conventional treatments had failed. Gerson and Schweitzer remained friends for life, and maintained regular correspondence.  Schweitzer followed Gerson’s progress as the dietary therapy was successfully applied to heart disease, kidney failure, and finally – cancer. Schweitzer’s own Type II diabetes was cured by treatment with Gerson’s therapy.  My interest in the Gerson therapy stems from its potential application to seizure conditions.  Despite the success of another diet, the ketogenic diet, in treating refractory epilepsy, it is rarely prescribed in favor of AEDs.  Unfortunately, the research into alternative therapies such as diet and herbal remedies is non-existent compared to the resources devoted to developing pills to reduce the impact of seizures.  To date, there is no pill for Rasmussen’s and the outlook is not positive in the near term for such a break-through.  Although the research is in the early innings on CBD and currently focused on Dravet’s Syndrome, it is good to see the interest in an herbal remedy.   As far as I know we do not have a case of RE being treated by CBD.

Rasmussen’s encephalitis is the rarest of the rare.  There are globally a few hundred new cases each year.  Every family impacted by the disease knows the despair and desperation it imparts.  RE occurs in all corners of the world without regard for race or ethnicity primarily impacting children. What complicates the search for a cure is that RE is a condition without a stable disease population, or a supportive constituency.  With the “success” of the hemispherectomy surgery, RE families are able to move on and resume a new normal life hopefully without seizures.  Having considered their children “cured” and in the aftermath of this radical surgery, the families become part of the hemispherectomy community and no longer refer to their children as having Rasmussen’s.  This dynamic of a small, but constantly changing group of active patients has resulted in the lack of research dollars and interest in RE.

This observation leads me to another topic that I have riffed on in the past.  While all of our kids are miracles, courageous, and inspirational, the hemispherectomy surgery is not a miracle.  While the surgery is a technical marvel and I am thankful for the skills and dedication of the neurosurgeons that perform the surgery, the hemi surgery is devastating and a blunt response. It is frustrating to see the media continue to pick-up stories about hemispherectomy patients that extol the virtues of the surgery as a cure.  While the publicity for the disease is welcomed, these stories perpetuate the myth that the surgery is a cure without severe costs. 

What is a marvel and a miracle is the human brain and its ability to adapt and rewire itself despite the unwelcome instrusion of a surgeon’s scalpel.  Thank you for your continued interest in our research and mission. 

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