If I fall pregnant, I will be able to genetically test for Ichthyosis in the womb. There is a one in eight chance for me to pass on my condition (as a whole) to my child, and it’s inevitable for me to pass on the gene. There’s a greater chance of my child acquiring the condition if my future partner carries the recessive gene too.
My parents have been tested for the gene. They have a one in four chance of passing on Ichthyosis. They both carry the recessive gene. There was no indication I was to be born with ichthyosis – it was never detected before birth. They don’t show symptoms of it. I have had genetic testing too. I remember the day. The doctors shoved a giant cotton bud up my nose and it felt like it touched my brain. Hurt like hell. My grandfather had some sore skin patches on his leg. I always wondered if he had mild Ichthyosis. But I can’t change past genetics. I can control future genetics.
I’m happy I was born. My parents did a wonderful job to raise me and to show me my worth. I know that for some people with serious disabilities and illnesses, they would not be happy they were born, and there may be resentment from both the patient and the parent.
I’m not sure if I would genetically test my unborn child for Ichthyosis. I’d have the test and then what? Would I go ahead with the pregnancy? I’m not sure. Would it enable doctors to be more prepared upon my baby’s arrival? I already know there’s a likelihood of passing on Ichthyosis, so perhaps one could believe that I’d be prepared for what may lie ahead, medically and socially, because I am familiar with the condition. But I don’t know what it’d be like to have a healthy baby – one without ichthyosis – either. Would it be better not to genetically test in the womb?
These ethical issues about genetic testing for disability and illness are hard to discuss. I think they’re bigger than choosing a baby for its sex or hair/eye colour. There is the assumption by society that people with disabilities and illnesses have less of a quality of life. That we are suffering and a burden on our families, the economy and the medical system. There is misinformation about disability and illness because of history, textbooks and media representations. These assumptions infer that we’re an inferior race.
Before I found my strong identity and made many friends in the disability community, I would have said NO to bringing a child with Ichthyosis in the world. I don’t believe one life is more valuable than another. And I don’t like the view that someone like me should never have been born. But from my own experience – and I acknowledge the varying degrees of ichthyosis – this condition can be difficult. But my quality of life in recent years shows the very reason why a child with my condition should be born. Life’s great. I feel enriched and empowered. I’ve made my illness part of my identity. Yet it doesn’t define me – I’m more than my illness. I’m proud to be different. Disability culture is rich, and it is important to maintain a diverse society.
I also have more information than potential parents without the gene. I’m not measuring a quality of life by a text book or assumptions, I’m measuring it on my own experiences.
Ichthyosis is painful. My variation is not fatal, but there are forms that are. It’s socially challenging. People are cruel. But. I’ve learnt to cope well. It’s not something to be pitied. I’m sore but I’m not suffering. Treatments are progressing. I am ok, but how can I know whether my child will cope in the same way? While I don’t want a cure for my own ichthyosis, my feelings about the responsibility of carrying this condition to another generation are unclear.
Would I knowingly pass ichthyosis onto my child, despite the experience and infomation I have acquired? Could I put my baby through what I’ve been through? The little person that I’d love and protect more than anyone else in this world? I’m not sure if I could.