Skip to main content
. 2017 Mar 22;37:85–97. doi: 10.1007/8904_2017_17
Impact reported on the reproductive decision-making process of the knowledge that they had Fabry disease Patient quotes
No negative impact “No, it <having Fabry disease> didn’t matter … My wife and I discussed Fabrys, and decided we wanted at least 2 children.”
“No, not at all. My dad always told me he had enjoyed his life and was glad he was born and hated when his dad told him if he knew his boys would have Fabrys he wouldn’t have had them.”
“No, but it has changed that decision for some of my family members. I figure my life, even though not easy, is worth it. So my kids if they got it would feel the same way. Some of my family have a harder time with that feeling.”
Mixed impact “Yes, from age 18 I was certain I did not want children because I did not want the disease to continue. I was the youngest person in my family that had Fabry and the disease would end with me. My brother had two kids, but male, so I would be the last of it. But then I got married and I changed my mind and wanted children.”
Negative impact “The treat<ment> is great for many reasons, but the pain from neuropathy is not controlled enough for me to be comfortable in having a child who could possibly go through the type of pain I did growing up.”
“YES … I had a tubal ligation at age 24”
“Once I knew I had Fabry it was sort of the final straw in deciding if we should have kids or not. I felt selfish possibly bringing a child into the world with Fabry. I know this doesn’t take into consideration all of the other facets of a child, and that if my mom had chosen that, then I wouldn’t be here. But for me I would feel so guilty watching a child suffer the symptoms of Fabry, knowing I chose that for them, in sense.”