Over 20 years ago Nicola found out that her mum (Lynne) had been diagnosed with Huntington’s disease, a condition that had been part of their family for generations but had skipped three other siblings and found to have been inherited only by Lynne. People that have the chance of inheriting the faulty gene have a 50/50 chance of doing so, so it was unusual for Lynne to have been the only one of four to have been diagnosed. Because of this result, Nicola faced the same decision as her mum all those years ago, and with onset typically between the ages of 35-45 she made the choice to take the predictive genetic test that has famously been likened to the ‘flip of a coin’.

Huntington’s is a progressive neurological disease that affects your brain and nervous system. It can cause changes with a persons movement, learning capabilities, thinking and emotions and once symptoms begin, the disease gradually progresses, so living with it means having to adapt to change, taking one day at a time. 

Sometimes, symptoms are present for a long time before a diagnosis is made and professionals and families can mistake Huntington’s for a different illness such as Parkinson’s or Alzheimer’s. This is especially true when people are not aware that the faulty gene is in their family and that they are at risk, making the work the HDA do absolutely critical in terms of raising awareness as well as community care.

In the lead up to Nicola’s test, we both undertook 10 months of weekly therapy, both individually and as a couple to ensure we were as prepared as possible for either outcome. You can never quite prepare yourself fully, however it ensured that the consultants assigned to us through the fantastic genetics centre at Manchester’s Saint Mary’s Hospital were happy that we had taken as many precautions as possible to ready ourselves, and that our mental state was sound.

We are nearly three years on from receiving the news that Nicola does NOT carry the faulty gene and we are more involved in supporting the HDA than ever. Lynne is now beyond the usual age range of having an onset of symptoms so, as a family, we have been extremely lucky. This has made us more determined to give time and energy back to those whose coin fell on the flip side.