Hello, I’ve recently found out that my husband most likely has NF1 and my daughter (8 months old). I’ve read everything I can on it and understand how it is managed but I’m looking for others personal experience with nf1 in children. How did it effect them ect? Waiting for pead apt now and referral to genetics. Thank you
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My son doesn’t have this diagnosis. But he has a fairly uncommon diagnosis, I’ve found Facebook parent groups set up for his diagnosis invaluable over the years.
Just a quick Facebook search and I found a couple of NF1 groups.
Good luck, I know how daunting a new diagnosis can be.
My son has NF 1 also.
NF has a spectrum much like autism. Some people have only the cafe au lait skin lesions and at the other end people can have profound intellectual disabilities / benign skin tumours etc. The full extent of the condition is not known until puberty. it can be passed down from a parent or a genetic mutation. There are support services around including the childrens tumor foundation. If your partner is diagnosed with NF it will be a good idea to have genetic counseling as there is a 50% chance they will pass the condition on and it usually presents further along the spectrum for those children. My son will likely have a vasectomy when he is 18 and have his sperm stored and use IVF technology to conceive his children if he chooses. In the meantime you need a good paediatrician and ophthalmologist to guide you and support you throughout your journey. As with all medical conditions having regular medical checks and accessing early intervention as needed will benefit your child.