“We had to do something to make some noise”

A feature film is being released later this year with MS as a central theme. The couple behind the movie hope it’ll raise awareness of the condition.

Take My Hand will be released in over 150 cinemas in September. It’s a romantic drama based on the true story of Claire Jensz, who’s the executive producer, and her husband John Raftopoulos, the writer and director. They're played by Radha Mitchell and Adam Demos.

The film follows Laura (Claire) as a successful Australian woman living in London. She’s diagnosed with MS at the peak of her career. After losing her job her husband dies suddenly and she returns to Australia with her three sons. A chance meeting with her childhood sweetheart changes her life.

Claire and John, who are both 53, spoke to us about MS, making the film, and what they hope to achieve.

Claire: When I was about 28, I couldn’t walk very well and my eyes went weird. It was really sudden. My GP advised going to a neurologist. I had an MRI and a lumbar puncture. I had no idea at all about MS, so I was completely shocked, surprised and upset.

The neurologist told me to go and live life. He said I might be fine and it might never happen again, don’t panic yet. I took medication that was new back then, Interferon. It was pretty hard with the side effects.
Claire

They thought that was how mums were

I had three boys, the first when I was 31. They kind of knew mummy was sick always, because they’ve never known me any other way. A bit wobbly, a bit fragile, a bit unwell. But they just thought that was how mums were.

Then they’d see friends' mums doing things that were fun, exciting things like skiing that I couldn’t do. And they figured out I was different, but they were ok with that. My second son was very helpful, like a carer. A helper from the beginning, he was great.

Picture of a man and woman standing with three boys

Claire and John with the actors playing her sons in Take My Hand

Treatments

In terms of treatments, I’ve done everything. I was on Interferon, I was on a chemotherapy drug which wasn’t nice. Then I was on Copaxone for quite a while. I’ve been on Tysabri and loads of steroids. Now I’m on a drug called Ocrevus. It’s great, for me the side effects are zero.

I’ve been sick for so long I don’t really remember what it was like before. I have a lot of bad falls. My memory is pretty bad, I have brain fog virtually all the time.

My confidence is the worst part. It’s kind of gone now. Going to new situations I’m not confident. I feel a bit vague and fragile. I have to use catheters to go to the toilet. But I try and focus on the things I can do. I still ride a horse.

The film

Picture of a man and woman on a film set

John: When Claire and I rekindled, we hadn’t seen each other for 22 years. We spent the first six months telling each other about our lives. And I said, there’s so much here for a story.

I thought we had to do something to make some noise. Not only for Australians with MS. There are around three million people with the disease. And then I began writing in 2017 and mixing in the love story.

It’s very true to life. We didn’t meet at a farm (as in the film) we met at school. I was obsessed with Claire and I jumped into the friend zone because I didn’t think I was going to be good enough to have her. We remained friends after school. She took off to the UK when she was 24 and that was it. I didn’t see or speak to her for 22 years. In the film you see them bumping into each other where they used to hang out, which was beautiful but not true! Our friends put us together on Facebook!

We’re just lucky we found each other again. It doesn’t matter that Claire’s sick.

Raising awareness

I think in Australia MS hasn’t been talked about enough. It’s massive for everyone to hear these things. You can still find happiness and love with MS.
Claire

Claire: I want people to be educated about the disease. People think you die, and you don’t die. It’s not well understood around the world how it changes people’s lives now. You can live a good life. It might just be different and more challenging.

Maybe our film can help push things forward in getting people to talk about MS. Early diagnosis is critical because if MS is left untreated the more irreversible damage is done. If you’re diagnosed early, the damage is not done, that’s the key.

Watch the official Take My Hand trailer

Stills from Take My Hand production

Image credits for personal photographs of Claire and John: Betsy Newman Photography

You can watch the trailer and find out more about Take My Hand here