Neurofibromatosis? please help mee?!


Question: my bf has Neurofibromatosis and im wondering if it is serious i think he has nf1 because it appears to be very mild he has curvature of the spine and dislexia from it im worried for his health and im worried about having children with him could they become deformed? or live the rest of their lives in pain? i know there is 2 types on Neurofibromatosis and i know for sure he doesnt have the severe one anyone out there have it? or whos partners have it? how did your children turn out ? do they have many complications? please help me.


Answers: my bf has Neurofibromatosis and im wondering if it is serious i think he has nf1 because it appears to be very mild he has curvature of the spine and dislexia from it im worried for his health and im worried about having children with him could they become deformed? or live the rest of their lives in pain? i know there is 2 types on Neurofibromatosis and i know for sure he doesnt have the severe one anyone out there have it? or whos partners have it? how did your children turn out ? do they have many complications? please help me.

There is a 50/50 chance of passing it on.Nobody knows how severe it will be on the child but they wont be deformed.I have 3 kids and 1 who has NF1.So far (she is 15) she has no problems,just the spots no tumors.I have big problems and lots of pain.It has attacked my spine and hip.I chose to have kids and am glad I did.I couldn't emigine life without kids.Its your choice.

There are two main types of NF. NF one is the kind that usually causes skin abnormalities. It is usually mild, but can be severly debilitating if it's a bad form of the disease. It is genetic, but in 30-50% of cases it arises from a spontaneous genetic mutation. This means that yes, there is a chance your children will have it. Unfortunately, it is an autosomal dominate trait, meaning that you only need one copy of the gene to actually have the disease. If your bf has it, and you don't then there's a 50-50 chance your children will have it. It's is plausible that your children could be deforemed and live very painful lives. You could also have normal children who are unaffected by it. there's no way of knowing. I suggest,. that if you and your bf are ready for children, talk to a genetic counsellor. Most doctors can refer you to one, and they are better equipped to inform you of what life could potentially be like should you choose conceive and have a child.
My father has nf type two which is also known as bilateral acoustic neuroma. Basically benign tumors grow from the the 8th cranial nerve and spred to surrounding structures, affecting hearing and balance. If left untreated they can be life threatning. My dad was treated with a new (at the time) radiation technique known as cyper-knife which shrunk the tumors. They have not grown in 10 years. He is deaf in one ear and 65% hearing loss in the other. His gait is unsteady at times and he trips easily over things on the floor. He was a construction worker, so he had to retire early. For a long time he got really bad headaches as well, but they have pretty much subsided now.





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