As many as 100,000 Americans suffer from neurofibromatosis, often inaccurately identified as “Elephant Man’s Disease.” Many of them live a life of isolation, afraid of showing their deformities to the outside world. But thanks to the generosity of Scripps Memorial Hospital La Jolla and a team of gifted surgeons, a young woman has a new look, and a new outlook on life.
As a young girl, benign tumors began to grow and cover one side of Ana Rodarte’s face. By age 25, her advanced stage of neurofibromatosis had severely deformed the left side of her face, leaving Ana primarily homebound and unable to see from her left eye. It was then that she sought care from DOCS (Doctors Offering Charitable Services). Its founders, Dr. Munish Batra and Dr. Michael Halls, brought the case to Scripps Memorial Hospital La Jolla. For the past three years, DOCS and Scripps Memorial Hospital have handled Ana’s case free of charge, providing more than $500,000 in medical care and services.
“Tragically, this disease can be more than a medical condition, but Ana refused to let a disease rob her of her dignity and worth as a person,” says Dr. Halls, one of the lead surgeons. “The DOCS surgeons and Scripps provided services and care free of charge, but this is without a doubt the most rewarding work we have ever done.
Since 2005, Ana has undergone four surgeries at Scripps La Jolla to successfully transform the left side of her face. She suffers from NF1, the most common form of neurofibromatosis. It occurs in one in 3,000 people in the United States. Rarely are the cases as severe as Ana’s.
“When we were first shown a picture of Ana before her surgeries, we felt compelled to help this young woman,” says Gary G. Fybel, chief executive of Scripps Memorial Hospital La Jolla. “We are committed to improving the lives of patients, especially those like Ana who face very difficult health challenges.”
The complexity of Ana’s case deterred other surgical teams from taking on this case, but this did not deter the DOCS physicians. During the first surgery, a number of the larger tumors were removed. The second surgery involved removing many of Ana’s teeth which were decaying under an extra layer of gum tissue and re-structuring her nose. During the third surgery, surgeons drilled into Ana’s skull and performed a bone graft to support her left eye once hidden by tumors. And the fourth surgery was to put tissue expanders under her skin to stretch out her tumor-free skin for a more uniform appearance.
The all-volunteer medical team included:
- Munish Batra, M.D. - Plastic Surgeon
- Michael Halls, M.D. - Plastic Surgeon
- Andrew Chang, M.D., D.D.S. - Oral & Maxillofacial Surgeon
- Lokesh Tantuwaya, M.D. - Neurosurgeon
- Don Kikkawa, M.D. - Ophthalmologist (Oculoplastic Surgeon)
- James Tasto, D.D.S., Dentist
Ana’s treatment continues today as there is no cure for her condition, and the tumors will continue to grow. Surgery can remove the vast majority of them, while keeping the disease in check. However, her progress has been nothing short of miraculous. Ana has a new outlook on life, has enrolled in cosmetology school and is looking to help others dealing with neurofibromatosis.
“The world is filled with kindness and generosity,” says Ana. “And I am thankful for it.”