Celebrating 35 Years
neurofibromatosis, nf, nf1, faces of nf, neurofibroma

Tori – A Face of NF

I inherited NF1 from my father. I was diagnosed shortly after my birth. The doctor noticed that I had flat, milk-colored spots all over my body, known as café aulait, a symptom that led to my diagnosis.

Because of NF, I have tumors all over the inside and outside of my body that are sensitive to the touch and continue to grow in size. The tumors also run along the nerves of my spine, causing a tremendous amount of back pain, which at times, can be unbearable.

Having NF and being pregnant is especially difficult, as there is a 50% chance of passing it onto my daughter. As a soon-to-be mom, it is extremely difficult knowing that there is a high risk of passing the disease onto my child. Also, during my pregnancy hormones have caused me to get more tumors (fibromas) and many I already have grew larger. NF Midwest has been not only been my source for support and education, they gave me a much need scholarship for school.

“A scholarship from NF Midwest not only helped me financially, but it boosted my self-esteem. It helped tremendously to know that they were there for me.”

See More Faces of NF/Read Their Stories

 

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