Zebras: Rare Disease Awareness

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NEW ORLEANS, LOUISIANA--Every last day in February marks Rare Disease Day, internationally. The purpose is to encourage hope for cures as well as diagnosis. One out of every 20 people are diagnosed with some type of rare disease every year.

Tom Moore is a gentleman that works in the film industry in New Orleans. Tom also has an extremely rare disease with about 200 thousand other Americans. Tom has Neuroendocrine Tumors--a rare and hard to detect form of cancer.

In medical school, it is taught that symptoms can help to identify the illness. They often use the metaphor that "if it gallops like a horse, it's a horse." This indicates that diseases more often than not follow patterns. However, sometimes, when you are looking for a horse, you find a "zebra." Zebras are a metaphor for looking beyond what is common in medicine and zebras and their stripes are the pattern for Neuroendocrine or NET tumors. NET tumors have afflicted patients like the Queen of Soul Aretha Franklin and Apple founder Steve Jobs. 12 thousand Americans are diagnosed every year.

Tom remembers the day his life changed, saying "my first diagnosis came after Hurricane Katrina in 2005. I was the talk of the hospital. I had a seven and a half pound tumor. My kidney and spleen all came out in one day." Dr. Robert Ramirez of the Ochsner Medical Center, is Tom's doctor and says, "people can have no symptoms and that is what makes this disease difficult to detect. It's not until their disease has spread to multiple organs when somebody finds this."

Since 1988 Tom has worked in the film industry and spends nine months out of the year working in the Crescent City. His frequent traveling is convenient because the Ochsner in Kenner, Louisiana has one of the few programs in the world dedicated to treating NET tumors.

Over the years, Tom's job in film has allowed him to travel the world, and see many beautiful sunrises and sunsets. Tom says, "change is inherent in the film business. We have plans and make plans and that's what i do with this disease."

In 2018, a new treatment was approved called Peptide Receptor Radionuclide Therapy. PRRT is a revolutionary form of tumor cell-targeted radiation that is injected into the tumors. Numerous patients have shown positive response to the medicine and Dr. Ramirez says PRRT is being looked at for the future to help treat other forms of cancer. However as with any cancer, the Ochsner Neuroendocrine tumor program is about improving the quality of life and helping to promote hearts full of hope in all the men and women afflicted with this rare form of cancer.

Tom continues to go to Ochsner every eight weeks for four treatments and Dr. Ramirez says he is experiencing positive response. "I did four treatments with the nuclear medicine I'm not doing the 14 days on 14 days off. It's a sense of freedom that I haven't known for years. It's always warm and you're doing good and I like that," says Tom.

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