Leber hereditary optic neuropathy (LHON) Community

Meet, discuss & support other patients or families living with Leber hereditary optic neuropathy (LHON). Contribute to topics, or just share what's on your mind

LHON Mothers

Does anyone(mothers) who is a carrier or affected by LHON and have kids who are all not affected yet? If so, how old are they now.

I'm in a dilemma, my partner and I would love to have kids but we are seriously considering whether it is fair to the child knowing that the diseases will be passed on to them.

lissapoincenot
moderator

I'm a carrier, the mother of 3 children. The oldest was affected at age 19 and he is now 27. My daughter is now 24, and my youngest son is 21.

I knew nothing about LHON when my son was affected, so I never confronted the issue you're facing. However, one of my daughter's first questions was, "Mom, does this mean I can't have kids?" I told her we'd need to see how her brother's life went, and if it wasn't a life worth living then maybe not, but if he had a good life then she should proceed. As it turns out, her brother's having a wonderful life, so I expect to have many grandchildren!

We're also doing all we can to support those doing research toward a treatment for LHON. There has been great progress in the 8 years since my son was affected, and we're optimistic that things will continue to get even better. So hopefully by the time my daughter has children, then by the time they're old enough to become affected, there's an effective treatment.

There are already things one can do as a carrier to decrease the risk of onset (avoid all forms of smoke, limit alcohol and certain antibiotics, consider estrogen), and hopefully there will be more progress in that area also that will decrease the risk for future children.

Those are just my thoughts. Genetic counselors are trained to help people work through the issues you're wresting with. This company does phone counseling and knows about LHON, and can be helpful to anyone in the world:
http://informeddna.com/lhon