Muswell Hill campaigner making film to raise awareness of rare disease
- Credit: Archant
The activist hopes to draw attention to a condition that affects 25,000 people in the UK, but many people – including health professionals – have not heard of it.
Charcot-Marie-Tooth (CMT) is a genetic disease that causes gradual deterioration of the peripheral nerves in the hands and feet.
Douglas Sager, 67, was diagnosed with late-onset CMT in 2011, although it can start affecting people at any age.
“I was dancing two or three times a week, jiving and swing dancing, so it was quite a shock to be diagnosed so late in life,” Douglas said.
“No one’s ever heard of it. Your friends say: ‘What’s that you’ve got again?’
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“It causes you to walk quite funny so it looks like you’re drunk.”
But he added: “I’m [still] very active.”
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It took Douglas a long time to get a diagnosis, with a chain of referrals – in common with others with the disease.
He is now raising money to produce a 60 to 90-second film to throw light on CMT.
The film features people of various ages and stages of the disease.
There is 10-year-old Harvey, who has some minor nerve damage, his mother Lisa who has some difficulty walking, Emma, a young woman in a wheelchair, and Douglas.
They walk along and then the film transitions into an X-ray style animation, so that each person is shown as a body of nerves, revealing what can happen when nerves malfunction.
This X-ray effect is realised with computer-generated imagery and digital compositing.
The film was shot in a park in winter, so the bare branches of the trees add to the visual motif of nerves.
Douglas worked with film-maker Tim Partridge, who wrote the script.
The 67-year-old retired as a Haringey Council care worker a couple of years early, allowing him to follow other passions.
“The diagnosis has inspired me to do something with my life,” Douglas said.
“I’m not saying it’s easy living with a disability, but in some ways it’s inspired me to do things that I never would have had time to do.
“I did a film course many years ago, but I’ve never had the time or concentration to follow it through.”
The film was approved by specialist consultant, Professor Mary Reilly, as well as charity CMT UK.
Douglas hopes to show the film to healthcare professionals to ensure speedier diagnoses.
He needs to raise a total of £5,000 to make the film, with an impressive £3,000 already pledged.
To make a donation, visit https://www.justgiving.com/fundraising/douglas-sager