Georgina and Simon's success with Pre-implantation Genetic Testing (PGT)

Photo credit: Aga Kowalska

This is an inspiring story of hope and progress from ISG Member!

Meet Georgina and Simon from Devon, one of our members living with Ichthyosis with confetti a rare, severe type of ichthyosis affecting fewer than 50 people globally. With this autosomal dominant condition, Georgina faced a 50/50 chance with each birth of passing it on to her children. Despite the challenges this condition brings, her story is one of incredible strength and resilience. We are incredibly grateful to Georgina and Simon for sharing such a deeply personal story.

I wouldn't be able to cope with knowing I had passed on the condition. It's not just the mental side but it's the practical side of things. I have 2 baths a day and spend 3-5 hours doing my treatment, and I couldn't do that for a child as well.

Using cutting-edge genetic testing services like PGT (Preimplantation Genetic Testing), via services available in Devon with Fertility Exeter and Royal Devon University Healthcare NHS Foundation Trust Georgina has been able to have two healthy children.

PGT is a form of IVF that tests embryos for genetic conditions, allowing those affected by serious inherited diseases to build a family free of those risks.

Georgina's journey shows that science, hope, and love can create incredible possibilities. Share her story to spread awareness and inspire others facing similar challenges.

I never imagined that having children would be a possibility for our family - not a day goes by where I don’t have to pinch myself that these two bundles of joy have been brought into our lives. We cannot thank the whole team behind our two little miracles enough. They are our world. I hope sharing our story will help others to be in the very lucky position we find ourselves in with two beautiful little girls.

Georgina Burrough

The Ichthyosis Support Group has been working with Genetic Alliance UK recently to share information and member statements about how severe ichthyosis affects people and their parent caregivers. PGT, a treatment, is already approved for some types of ichthyosis. Currently, Genetic Alliance UK is in consultation for PGT to be used for more types of ichthyosis. They will be working with the Human Fertilisation and Embryology Authority to discuss this potential expansion.

You can view all PGT-M conditions currently authorised and awaiting consideration by the HFEA on their website.

We recently shared an article about Prenatal Diagnosis options open to families with ichthyosis who are planning to have or extend their family.

If you'd like to support our charity that provides information, resources, a network and a community for those affected by ichthyosis, please consider making a donation.

Watch Georgina and Simon's interview with local news BBC Spotlight

Photo credit: Georgina Burrough

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