Ramsgate ‘FND warrior’ Sarah shares the devastating impact of neurological disorder on her life – and her bid to raise awareness

Sarah's life has changed dramatically

In 2018 Sarah Drysdale was working as a full-time carer and enjoying an active social life.

But in December of that year everything changed when the then-25-year-old was struck down by a devastating neurological disorder.

The former Ellington student, from Ramsgate, was victim to functional neurological disorder (FND) which means the brain does not send or receive correct signals from the nervous system.

Symptoms vary but often include migraines, loss of limb control, slurred or stuttering speech, seizures, numbness and impaired vision.

Sarah said: “It happened very suddenly. I was used to having neck pain and dealing with that but then I could not feel my legs. At first I thought I had damaged my spine but scans showed that wasn’t the case.

“I was in pain all the time, my body turned against me, I couldn’t walk, couldn’t feel my legs or feet, I stuttered through sentences, got confused easily, lost my job, lost friends and my independence.

“Three months later I was diagnosed with functional neurological disorder. Since then it’s been a bumpy ride, more symptoms have been thrown into the mix. I started having seizures, frequent migraines and went into urinary retention.

“I now have to self-catheterize daily. My mum had to take early retirement to become my full-time carer and now helps me with my daily living.”

Sarah, now 28, does not know what caused her to fall victim to FND although it is sometimes stress or trauma related.

She says the impact on her life has been huge, adding: “I’ve often felt hopeless. My life has changed in a way I could never have possibly imagined but I am slowly learning how to adapt.

“ I’m learning my limits, recognising the signs of an oncoming seizure or migraine and with the help of my amazing physio, I’m getting more control over my legs and making them stronger.”

Sarah wants to raise awareness of FND and funds for the FND Hope UK charity.

She said: “ Earlier this year I started a YouTube channel called SassyFNDLife to help raise awareness and provide my personal experiences in the hope to help other FND warriors through their journey.

“This led to me wanting to do more to spread awareness of this often debilitating disorder. So, I decided to hold a stall at Ellington Park Christmas fair on December 5, fundraising for FND Hope UK, sponsored by Friends Of Ellington Park. I’ll be selling Christmas cards, decorations and more.

“Christmas is my favourite time of year, so I plan to spread plenty of Christmas joy while raising as much money and awareness for FND Hope UK as I can.”

Sarah, who studied art and graphic design, makes the cards and decorations. She said: “I have always been quite artistic and always made birthday cards etc for family and friends. I didn’t do it to sell them but thought it would be a nice way to raise money for FND.

“I think people do not know about FND, even when paramedics have to come out to me I have to give them a leaflet so they are looking through that instead of being able to attend to me. There seems to be so little research and you do not hear about it on the news, it just isn’t out there.”

Sarah hopes she can bring FND into the public eye and prompt a better understanding of the condition.

She said: “ I’d really like information leaflets in hospitals and GP surgeries. I know I’m not alone in having a member of staff in hospital not believe a symptom. I seizured in Ashford A&E bed, unable to talk but I could hear a nurse say ‘just leave her, it’s nothing’ it’s very worrying to be in a place of care and not be shown any.

“I’ve had a neurologist tell me to not cry about it as it’s not going to kill me. Which is true but my life is completely different now to how I wanted it to be. And I think having the leaflets distributed more widely will make FND real. When you see a leaflet for any other illness, you don’t question it and FND deserves to be the same.”

The journey for Sarah is ongoing with FND therapy sessions and a wait for a five week combined neuro physio and cognitive behavioural therapy programme at University College London Hospital, which is a specialist centre for neurology.

Find Sarah at the Ellington Park Christmas Fair on December 5 from 2pm-7pm. The event will also have a Santa’s Grotto, train rides, live music, raffle, stalls and food available from the new cafe.

Find her SassyFNDLife facebook page, with links to her youtube, by clicking here

Find FND Hope online here

4 Comments

  1. Thanks for sharing that Sarah. I wasn’t aware of FND, but like many readers, I am now. I do hope your journey gets much better for you soon.

  2. Thank you so much for sharing your story. I was diagnosed with FND in April of this year after experiencing many of the symptoms you described. It has been a long, scary, and difficult ride through accepting my diagnosis and learning to navigate life afterward. The fact that FND is so little known and understood even by doctors and neurologists means we often have to fight for help and care on top of our symptoms! Thank you for everything you are doing to raise awareness for this disease. I hope your symptoms improve with your therapy and understanding of the disorder. I recently started an Instagram account to raise FND awareness as well. I’d love to connect with you on there! @the.annegirl.

    Sending hugs your way,
    Sydney

    • Hi Sydney,
      I found it very hard to accept and still do at times! But do think accepting the diagnosis is the start of the recovery process.
      Fighting to get help is one of the worst parts, especially when you’re feeling awful! It definitely need to be recognised so we don’t have to explain what FND is to every professional.
      I don’t have Instagram unfortunately. You can find SassyFNDLife on Facebook and Twitter though, if you’re on there.
      I hope you get the help you need and your symptoms improve. It may be a slow improvement but don’t give up!

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