Kate Huynh was diagnosed with NF1 when she was 12 because of the cafe au lait spots. When she was growing up, small fibromas started to appear all over her body. Nobody in her family seems to have it.
At that time, NF1 was not well known in her country of Vietnam. Not many doctors and people know about this condition. People always ask, “What’s wrong with you?” and sometimes they suggest weird herbal remedies for a “cure”, but none of the remedies or suggestions have never worked out. Dealing with all emotional part has been the hardest for her. But the most interesting aspect was her friend who enjoys fidgeting with her fibromas, when they understood about her condition and knew that it was not contagious and did not affect anybody when the two friends would interact.
When Kate was 17, her left knee was hurting and getting bigger. The doctors found a tumor inside her left knee and she had her first operation to remove a plexiform neurofibroma that was growing inside causing the discomfort. Since then, her life has been full of regular MRIs scans and check ups. She has had around 4 knee operations.
Luckily, in 2019, she met Dr Mckay Mckinnon from Chicago. Dr. McKinnon is a plastic surgeon who helped her by removing the annoying tumors in her left buttock, thigh and leg. Kate is going to have another operation again when Dr. Mckay Mckinnon returns to Vietnam, hopefully within the upcoming year. Kate already has many of her family members living in the United States and is hoping that eventually she'll be able to come to the US to visit.