Emily Dent, Alison Lashwood and Tom Baldwin on where the boundaries should lie

The best chance for my children
Emily Fazal wants a burden lifted

Who wouldn’t want a fit and healthy child with a lowered risk of inheriting a serious and debilitating condition?

I have knowingly lived with such a condition from the age of 19 when I was diagnosed with Multiple Endocrine Neoplasia Type 1. My tumour suppressor gene doesn’t have a ‘switch off’ button for tumours that grow in my endocrine system. They are mainly benign but unfortunately can spread and become cancerous.

I would not wish it upon anyone else, especially a child.

Operations
So far I have had tumours removed from my parathyroids and all of my pancreas removed, suddenly becoming a type 1 diabetic. I also continue to have a pituitary tumour (prolactinoma) with probable surgery in the future.

Although I do lead an enjoyable and fulfilling life within limits, I have to deal with the symptoms and consequences of MEN1 on a daily basis. It would be so wonderful to not have to worry about the results of the next blood test or what the next scan might reveal or how soon the next operation will be.

But the worst thing is that I could pass on this burden to my child: a 50/50 chance, like the toss of a coin. Could I take that risk and have my child turn around to me and say: ‘Mummy, you knew you had this condition, so why did you pass it on to me?’

Lifting the burden
The urge to have children is no less strong in MEN patients of child-bearing age, but their experiences of MEN leave a sense of fear for the future of any child they produce. Even though that child may be diagnosed early on to ensure time-appropriate treatment, this risk feels too great.

PGD would give my family the opportunity not to have to pass this burden on. I couldn’t guarantee my child’s total safety but I would at least have ensured in the beginning that I had helped to provide my child with the optimum chance in life.

Emily Fazal, who together with her mother Liz, was a co-founder in 2002 of AMEND (Association for Multiple Endocrine Neoplasia Disorders). The views expressed here do not necessarily reflect the views of AMEND or its members.