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 'Why I want an IVF baby to screen out gene that made me go blind'

Beth Rose

BBC Access All

As well as an influencer, author, broadcaster and RNIB ambassador, Lucy Edwards is hoping to become a mum

Blind content creator and TikTok star Lucy Edwards says she's "so excited" to be on a health kick to undergo IVF, but reveals the dilemma she faced in deciding to screen out the very gene that made her blind.

"I'm so broody," the 29-year-old tells the BBC Access All podcast.

Lucy and her husband Ollie married at Kew Gardens two years ago and are now ready to start a family - but there are complications to consider.

Lucy has the rare genetic condition Incontinentia Pigmenti (IP) and lost her sight due to this aged 17, just months after meeting Ollie.

The condition runs through the female line - Lucy's mum has IP although isn't blind, her Grandma did too and her great-aunt was blind in one eye.

Lucy is totally blind, but, if she had been a boy, she may not have survived.

The abnormal IP gene is located on the X chromosome. Women have two X chromosomes, while males have X and Y, meaning the appearance of the gene can be more catastrophic in male pregnancies.

"My grandma actually had nine miscarriages," Lucy says.

This is one of the facts that played into the complicated decision Lucy and Ollie made to opt for pre-implantation genetic testing, a special type of IVF where embryos are created outside of the body and screened for the genetic condition. Only those embryos which are not affected by the condition are placed back into the womb.

Without medical intervention, Lucy says there would be four potential outcomes to any pregnancy she carried: A healthy and unaffected boy or girl, an affected boy she would likely miscarry or who would be born with severe brain damage or an affected girl.

Continues here:  https://www.bbc.com/news/articles/c5y4v7vj039o