Hello, my partner has HNPP a genetic condition that is degenerative and causes pain and loss of sensation in his hands, arms and legs. It is Hereditary and so our two children (age 6 and 1 years old) have a 50% chance of also having it.
We had assumed initially that we wouldn't get them tested and would instead let them choose whether to as adults. My partner only got a diagnosis as an adult following years of unexplained pain.
Our 6 year old son has mentioned a few things recently that have made me wonder if he may have it (he mentioned tingly cold fingers after riding his bike). But that may be unrelated.
I am wondering if anyone has been in the same situation and could help us think through the pros and cons. We don't want to worry him with something if we don't have to, but I also wonder if there's things we could do now to protect him if we did know he had it. Such as avoiding certain physical exertions on his limbs.
Thanks in advance for your thoughts.
