My ex-wife of 15 years has Lamellar ichtyosis, so do 2 of our 3 children (both boys). While my daughter stands a good chance of being a "carrier", my boys actually stand a better chance of having unaffected children than she does.
There is not a single person in my extensive, dutch, catholic family affected. I have over a 100 people in my immediate family and no where is ichthyosis prevalent. My father and I do share a very mild skin condition which only affects the hands in spring and fall. Our hands tend to peel. I do believe that this may be the reason that 2 of our 3 children are affected by ichthyosis. Strangely, the boys have inherited all the recessive traits of their parents. My ex is a brunette with brown eyes (both dominant), whereas I am blonde and blue-eyed (both recessive). My wife has ichthyosis (recessive), whereas my skin is "normal" (dominant).
The only way to know absolutely for sure whether or not to date, marry then pro-create with a person you fall in love with, is to comprehensively pre-screen their family medical history and ask for a DNA sample.
Right, not only completely stupid but impractical as well. My boys are extremely well adjusted and have a milder version of the disorder than that of their mother. She in turn has a milder version than her biological father. A well respected Canadian dermatologist who has done extensive research into the disorder locally advised us that although we stand a 25% chance of having children and subsequently grandchildren with this disorder, it will eventually be "bred" out.
My children accept living with their skin affliction, and live otherwise ordinary lives. Quite a few people have mentioned they find my ex-wife and children, Unique. Sets them apart from the crowd of otherwise boring people.
I am overweight, this runs in my family as well. I eat healthy, exercise regularly, but still I am overweight. Should I not have children just because I'm overweight? If you tried to tell me that I wasn't allowed or shouldn't, I'd simply tell you to stick it! lol.
I love my ex-wife unconditionally (divorce was not my idea and had more to do with money issues than anything else. Skin was definitely NOT a part of it). I love my children the same way. Society is self-conscious in times when it need not be. The person you fall in love with, with "normal" skin may have their own issues. Weight, anxiety, depression, severe PMS, and the list goes on. Focus on living your life with your affliction, don't let it live it for you. I could not imagine life without my precious children.
Would you rather not have been born, than live with ichtyosis? I would hope your answer would be the latter. Life is much too precious to focus on our own inequities.
Just my 2 cents worth.
Proud Dad of Chesney (LI), Courtney (Unaffected) and Brendan (LI)