Bilateral Adrenal Medullary Hyperplasia

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There are only 32 recorded cases of Bilateral Adrenal Medullary Hyperplasia.

This week we are examining a story about a young man who had a hereditary disease. He was one of several in his family who apparently had suffered these same symptoms which are believed to mean that they had the same illness. Doctors had not been able to diagnose what was wrong. This young man became crippled and bed -ridden and medical science was not helping him get better. The best they could do was help him survive in bed, suffering from progressively intense weakness and fearing that he would die. He could not work, get out of bed, go to school or the store, all he could do was lie in bed and read old medical texts. He scoured old books to see if he could find references that described his symptomology.

Over a period of eleven years, he read all these old books and educated himself about what he was reading and what he was suffering. He finally found what he thought was wrong with him and he and a friend went to a medical convention to try to convince the doctors at the convention that he had one of only 32 recorded cases of bilateral adrenal medullary hyperplasia.

He was so insistent with his presentation that the conferences began to allow him to present on his situation. In order to go to the convention, he would have to buy an entire row of seats on a plane and then get an ambulance or a station wagon to take him to the hotel, and his friend would help him get up and get to the stage to present.

What an amazing story of intelligence, deliberation, determination and success! He and some of the doctors at the convention who bought into his research even though he was not a doctor and had not graduated from college, began to work on treatments and experiment with things to do to help him get stronger. The organization where he obtained acceptance and a positive reception was the National Dysautonomia Research Foundation, a group who focuses on adrenal research.

This young man was able to rent a van and have a friend drive him over 500 miles to Birmingham to repurpose a drug called Levophed, which is basically an injection of noradrenaline. The process of repurposing means that doctors are free to use a drug off label or to use it to treat things which in their medical judgment would help even though that is not what the FDA allows the drug to be used for. Doctors often do this but there is always risk for the patient and the doctor when they prescribe off label uses for a medication.

He eventually determined that his adrenal glands were acting as if they had a tumor even though the tumor did not show on the scans. But he convinced a surgeon that his adrenal glands needed to have the center of them, the medulla popped out. This surgery was not one that was accepted by mainstream medicine. It took over 17 months to find and convince a physician to undertake this surgery as an experimental process. But he did find one at the University of Alabama. The treatment was a success and he has been able to get up and stay on his feet for hours and to go back to school where he is now doing research for others suffering from rare and unusual diseases and trying to find new treatments for them.

This is a miracle story about the human spirit and the courage and determination of a single man who changed medicine and the trajectory of his own life. Listen to our discussion and be encouraged!


This Health cast was written and presented by Dr. Kathy Maupin, M.D., Bio-identical Hormone Replacement Expert and Author, with Brett Newcomb, MA., LPC., Family Counselor, Presenter and Author.

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