Ehlers-Danlos Mom Makes Tough Decision For Third Child

Veronica Foale says Ehlers-Danlos Syndrome has not stopped her from having a good quality-of-life.  

By Fred Hooper.

VeronicaWhen Veronica Foale was diagnosed with a genetic disorder she was also told there was a 50 per cent chance she would pass this condition on to her children.

She already had two children when she found out her physical problems were caused by Ehlers Danlos Syndrome (EDS) and doctors urged her to think long and hard about having more children because of the risk she could pass on this genetic condition.

After a lot of thought and consideration Ms Foale did have a third child and her little girl was diagnosed with EDS.

“We weighed up the risks and we thought well, we’re not going to be given anything we don’t know how to deal with, as it stands,” she said.

Her own diagnosis of EDS came as a relief after years of undiagnosed symptoms.

“When you can’t tell people why you’re feeling so bad,  people don’t believe that you really do feel bad,” she told Helen Shield on 936 ABC Hobart.

The basic daily functions like brushing her teeth, showering and eating breakfast can be more taxing for Ms Foale than most other people.

“It takes twice as much muscle strength or muscle work for me to do everyday things.

“If you think of the tendons surrounding your joints as a stretchy rubber band that stretches and then snaps back when your joint relaxes.

“Mine’s more like chewed out chewing gum in the sun, it doesn’t have any snap back so my muscles have to do the work that my tendons and connective tissue would generally do,” she said.

After conversation and consideration with her husband the decision was made to have a third child and it was very clear to the Foale family there was a 50 per cent chance of passing on EDS.

“The older two children have Elhers Danlos, I do, we know what we’re doing.”

The Foale’s discussed the options with a geneticist and in vitro fertilisation (IVF) and preimplantation genetic diagnosis was recommended, however the family weren’t prepared to go down this path.

“For us it was too much like weeding out the bad eggs.  So for us it was just too much like playing God, picking one thing over another and so we elected against it,” she said.

Veronica has written about her decisions across several online platforms and found the reaction has been mixed and widespread.

“There’s been a lot of opinions, especially online, because everyone’s got an opinion there and they don’t have to put their name to it.

“Other people seem to feel that because I’m disabled and because I’m a woman, that they have some right to my reproductive choices,” she said.

Some of the comments and opinions were that Ms Foale was ‘irresponsible’ for the decision to have a third child, which wasn’t easy for her to accept.

“Which I think is offensive, to the extreme to imply that somebody with a disability can have no quality of life and that they can’t contribute to society, I mean that’s stupid,” she said.

After all the comments and conversation Ms Foale stands behind her decisions and her message is simple.

“My reproductive choices are no one else’s business, frankly,” she said.

 

What is Ehlers Danlos Syndrome?

  • Ehlers Danlos Syndrome is a gene mutation that causes variation with collagen
  • Collagen provides strength and support to joints and EDS weakens and stretches that material
  • Symptoms can range from back pain, joint pain or easily damaged and stretchy skin
  • More on Ehlers Danlos Syndrome

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