Today’s story in Give It All You’ve Got comes from Carrie Fulcher.
Hollie’s quote — “You get 3 choices in life: give up, give in, or give it all you’ve got” — inspired this series. It resonates across our entire community, but it speaks with particular force to adults living with HH Syndrome, many of whom have walked a similar road of being dismissed, misunderstood, or told their symptoms were something else entirely. Carrie knows that road well.
Carrie, from the United Kingdom, was misdiagnosed with temporal lobe epilepsy and underwent unnecessary surgery to remove her temporal lobe before finally receiving the correct diagnosis of HH Syndrome in 2013, at age 30. She lives with daily gelastic and complex partial seizures, has worked in accounting for 12 years as a member of the Association of Accounting Technicians, and hosted the Adults with HH Syndrome Path at our 2026 Patient and Family Conference — the first time this community has had a dedicated space of its own. She’s also an advocate through her work with Hope for HH UK and their continued partnership with us to cofund research. She now devotes much of her time to advocating for others affected by HH and sharing research to raise awareness of the condition.
What “giving it all you’ve got” means to her now
“In my time on this earth I want no stone unturned whilst trying to decide on what surgery to undergo. However whilst I do this I want to make a difference to others so they don’t have to experience the trauma and pain of a life changing incorrect surgery. I believe this happened to me because I can be a voice for those that can’t and therefore I want to do all I can for others to understand what it’s like living with HH. For years the isolation made me so mentally unwell and therefore it’s my mission to change that.”
What HH Syndrome — and years without the right diagnosis — tried to take from her
“Living with HH and having an incorrect surgery stole my confidence, my hopes and dreams but it also stole my daughters’ childhoods. After years of suffering mentally I built myself back up piece by piece with the determination that I would no longer allow those doctors to make me feel small anymore and no longer wanted this to define my legacy. Instead I found a more meaningful purpose in life that I would be happy to have as a legacy and a memory for my family to look back on when my time on this earth is over.
I would have told my prior self not to settle for one doctor’s opinion, the brain is far more important than people realise and brain surgery should not be offered lightly, I would have told that doctor my symptoms didn’t add up to a clear scan. Seizures don’t just happen for no reason so he should have searched harder for the answer.”
What she wants every adult in this community to know
“I would tell anyone that is diagnosed with a HH to reach out to our community to take away the isolation as that is the hardest part of living with a rare condition and also surround yourself with the right friends and family who take the time to understand.
I would also say that determination gets you a long way so not to ever give up on yourself, don’t let this illness break you. Let it make you! Keep chasing your hopes and dreams, as you would if you weren’t poorly.
After losing many friends to different illnesses I have learnt that we don’t know what’s around the corner so live life to the full however that looks to you. Celebrate the good days and give yourself grace to rest on the bad. You may have to do things differently but having HH doesn’t mean you can’t try to live the independent life you long for. And most importantly to remember you are not alone even when it feels a lonely place! Keep being your real authentic self and never let anyone dull your sparkle.”
Thank you, Carrie, for your honesty, your fight, and for building a home within this community for adults who needed exactly that. This is why we fight.
Inspired by Carrie’s story? Donate or start your own fundraiser at givebutter.com/2026-hhsyndrome-awareness.
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