Tina's NF was confirmed at age 13 when she had a fibroma removed and tested. Tina grew up with learning disabilities and speech issues. Now she is a wife and mental health therapist. She is a wife and mother of two young adult children one who also has NF1.

Tina experiences a pain that is best described as sending volts of electricity throughout her body. This chronic pain is a constant for her which means 24 hours a day x 7 days a week. It is the kind of pain that stops her from breathing, and causes migraines and severe upper back pain as well. The back pain is due to plexiform fibromas on her spine. Unfortunately, no physician will operate on those. Tina does not take narcotics, but has been begging her local university hospital to get the trial drug. Calling monthly, a year later, the drug trial became a reality. Tina just started taking the magic blue pills which is her last hope for pain relief. So far she has had good results.

Eight years ago Tina had an aneurysm and died momentarily. This was also caused due to her NF. Her near death experience forever changed her outlook. She is happy to be alive even living with all the side effects of NF1. During that experience, God let Tina see and feel what life would be like if she went to Heaven or stayed here on earth. Heaven was a euphoric feeling which she feels guiltily for leaving behind, because it felt so utterly unbelievable. Staying alive meant lightening volts of pain, deep breaths that hurt, anxiety and tears but all of that with her family. Family memories of watching her children grow into amazing adults her wonderful marriage made staying alive the right choice.