Family Support and the Mental Health Impact of Living with Dravet Syndrome

Do you have days when you need to talk to someone who really understands what its like to be the parent or carer of someone with Dravet Syndrome? Teresa Finch, our Family Support Manager is here to help. 

Being the parent or carer of someone with Dravet Syndrome can have a huge impact on mental health. A recent study showed that over 90% of parents/carers reported feelings of depression, anxiety and stress disorders. 

As Mum to 25-year old Amy, who has Dravet Syndrome, Teresa has lived through the ups and downs of being a Dravet parent. Here she shares some of her own mental health experiences, how she’s learnt to cope and the benefits of talking openly about mental health issues caused or increased by the challenges of living with Dravet Syndrome.  

“I experienced my first breakdown some twenty-odd years ago, when Amy was very little”, she says. “Those early years of coping with seizures and hospital stays took its toll. Looking back now, I believe I was suffering with symptoms similar to those associated with post-traumatic stress (PTSD). I was constantly fighting negative thoughts, experiencing feelings of guilt, a sense of hyper-vigilance resulting in little sleep.

Family and friends would view me as being exceptionally strong - if only we all had a pound every time we were told ‘I don’t know how you cope’, we’d be rich, right?  Of course, it is possible to be both strong, and struggle with mental health at the same time. But we all have a limit. 

Only a couple of years ago, I reached my limit again and had another breakdown. The anxiety was crippling, I was unable to leave the house alone for months. The help I needed wasn’t easy to find so in the end, I paid for private CBT (talking) therapy, which was very helpful”.

The good news is, the environment has changed since Amy was first diagnosed so many years ago.  

“Back then, there was no DSUK with the amazing support network we have now, and no one I could call up who would really understand what I was going through”, Teresa adds. “That’s why I’m so passionate about my role here at DSUK as Family Support Manager. If you need to talk, I’m here to listen. 

Awareness of mental health issues associated with caring for someone with a complex condition, such as Dravet Syndrome, has also improved enormously. There is help out there, even if its not as easy to find as we would like. Talking about it openly with each other, family and friends is a good first step, followed closely by speaking with your GP. 

Above all, I would say to other parents to try and lookout for yourself, and be gentle to yourself. What you are going through is a huge, forever life-changing event. You will get through it, and there’s a whole community here to support you”.

Teresa is available to provide emotional support for families living with Dravet Syndrome. Her working hours are Monday-Friday, 10:30-15:30 on 01246 912421.

If you or someone you know is struggling with mental health, here is a list of self-referral services that you may also find helpful:

• Self-referral talking therapies (England only) 
• Self-referral CBT therapy (Wales only) 
• In Scotland and Northern Ireland you can't self-refer in the same way for government commissioned therapy.  However the following are offered: Telephone support service (Scotland only); Telephone support service (Northern Ireland only) 
• UK wide, the MIND contact page is also helpful