My 21 yr old sis has nf1. will she live a long life? she never had tumors, just the spots from birth.

No telling: The course of neurofibromatosis type I is famously variable. I know several people who have it, and those whose disease is this mild seem like anyone else. So her odds are good, and I trust she will be vigilant. I am glad that she has a loving sister who would take the time to ask a group of strangers. Many live long lives without having this happiness.

She certainly can!: NF1 can be a very serious condition. But it can also present as just the spots and not much else. Just like there is an entire spectrum of possibilities when someone has diabetes -for instance, you might just have to watch your diet, take a pill a day, or might have to take five shots a day -there is an entire spectrum for NF1. If she has come this far and just has skin lesions, outlook is great!

Learn about NF 1 at : shttp://www.ctf.org/Learn-About-NF/What-Is-NF.html & http://www.nfnetwork.org/uploads/file/papers/Clinical_Man._NF1_.pdf. Diagnosis requires presence of 2 or more major criteria. Cafe- au-lait spots occur in other genetic disorders. If evaluation by a geneticist & tests for mutations of Chromosome 17q11.2 confirm NF1, she needs counseling on each of her children's 50% chance of inheriting It.

Usually normal: If there are no complications, the life expectancy of people with neurofibromatosis is almost normal. With the right education, people with neurofibromatosis can live a normal life. Have your sister followed by a neurologist & genetic counselor. http://www.nlm.nih.gov/medlineplus/ency/article/000847.htm , http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm

Hard to predict: It is possible that she may live a long life but it is hard to predict this. Although she has no tumors currently she may develop those in years to come. She needs good follow-up with neurology and neuro-oncology over the years for best care.

Legius Syndrome ?: If one has the cafe aut lait spots and freckling seen with NF1 but they have not developed Lish nodules of the eye or subcutaneous tumors by age 10, consider Legius Syndrome. There is genetic testing that can be done. Legis syndrome was first recognized in 2007. Ask her neurologist about this possibility. The clinical course in NF 1 varies greatly. The affected gene codes for 3 different things.