Alport Syndrome

Alport Syndrome and children

People with children with Alport Syndrome expressed a mixture of emotions. On opening the letters stating their sons had Alport Syndrome, Lucy felt devastating guilt and Amanda said her “whole world had crumbled”. Neil and Diane said they were disappointed when they found out both their children inherited Alport Syndrome but said, “We'll cope with it, we've been through it, we know what it's like”. Lucy said she felt “stupid and irresponsible” that she had put her son at risk but said, “You come to terms with the fact that it's there in the background but it's not something you think about all the time”. People spoke about not regretting their decision to have children and adapting to their futures.
People spoke about their concerns for the future (see also people’s attitude to Alport Syndrome and their outlook for the future). For Lucy and Jayne, their main concern was their sons’ hearing. Angela felt that research on giving medication early on was encouraging, should her children develop symptoms. Richard Y felt that medicine was making “massive advances”. Steve felt that with current research on Alport Syndrome, the potential to “stave off” kidney failure until later life could change everyone’s views on family planning. People spoke about their own children’s future family planning: Steve hoped his daughter wouldn’t be put off from having children having seen him raise her with Alport Syndrome, whilst Paul and Christine supported their daughter Emma to get IVF/ pre-implantation genetic diagnosis (PGD). Richard X spoke about having a conversation with his daughter in the future about IVF and sex selection (see also Alport Syndrome and reproductive choices).
Parents spoke about explaining Alport Syndrome to their children. Lucy said that she will “drip feed information” to her daughters when her son develops hearing problems. She thought they would probably “spot things before they were happening”. Neil and Diane felt their children were a “bit too young to understand at the moment”.
See also Alport Syndrome - family life, hobbies and interests.


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