Our Members - Their Stories

MDANZ members share their personal stories of living with a Muscular Dystrophy condition. 

"Don’t ever give up" - Lara Elliott

19 February 2021
Melanie Louden

Having a rare disease hasn’t held Lara Elliott back from making the most of her life and fulfilling her dream to become a mother. She shares her story with Melanie Louden ahead of Rare Disease Day on February 28, 2021. 

Don’t give up on your dreams – ever.” 

That’s the advice from 32-year-old Lara Elliott who lives with the rare disease Emery-Dreifuss muscular dystrophy 

Lara was diagnosed with the condition when she was 10, but she hasn’t let it hold her back from achieving her dream of being a mother.  

“Have that family you’ve always wanted, because I did. That was my one thing – to be a mum. 

Emery-Dreifuss muscular dystrophy is a muscle wasting disease that mainly affects muscles used for movement (skeletal muscles) and heart (cardiac) muscle.  

Eventually I will end up in a wheelchair, but until then I keep going, she says.  

There are 11 known cases of Emery-Dreifuss muscular dystrophy in New Zealand, or 0.26 per 100,000 people. 

Lara’s diagnosis came after an incident at home prompted her mother to take her to the doctor.  

“Mum was blow drying my hair one night and she told me to stand flat because I was on my tiptoes. I couldn’t stand flat and fell over. (‘Toe-walking’ is a common sign of Emery-Dreifuss muscular dystrophy in children.)  

The Dunedin resident says it wasn’t too hard to get confirmed diagnosis. 

“I remember mum telling me we seem to have had the right type of people around us to get to the bottom of what I actually have.  

But it’s also a learning curve for a lot of doctorsespecially when I’m admitted for surgeries, because there is very little information out there on this type of condition. 

The progression of Emery-Dreifuss muscular dystrophy is affecting Lara more and more.  

She used to work full-time at Kmart as a checkout operator/supervisor but stopped working around 2013 because of the progression of her condition.  

“It was a hard decision to make,” says the member of the Muscular Dystrophy Association of New Zealand’s Southern Region. 

These days she is finding everyday tasks, that most take for granted, increasingly difficult,  such as putting clothes on, tying her hair and walking.  

I’m very wobbly and slow as a snailI can’t bend down to pick anything up off the ground, let alone get myself off the ground anymore. Just getting off chair is hard. 

Lara is a solo mum to Amelia, 4, and says the youngster is “the most caring little person”. 

She says, when Amelia was younger the greatest challenge was lifting her daughter, “which in the end got easier as she adapted with me, which was amazing”. 

Lara says Amelia is a great help 

“I can’t say how much she helps – it’s absolutely amazing. She’s always helping me, no questions asked, she will just jump. Picking something up, getting something I can’t get to, you name it. She is darn amazing for a person her age. "

Amelia is most definitely my world – I'd be lost without her. She has adapted to me from day dotI’m so very blessed.” 

Lara has great support from her parents, who both work, but says the hardest part is not being able to get out in the community with Ameila 

She’d love to get out and bond more with her daughter, and attend gala days and A&P shows, but that’s not possible because she can’t walk far. 

Lara, who is hoping to get funding for a mobility scooter to make getting out and about easier, says when you have a rare condition it can really feel like youre alone and nobody else understands”. 

“They may say they do but they actually don’tYou can feel very lonely.” 

She says there is little knowledge and information available about Emery-Dreifuss muscular dystrophy, and it is hard when there are so few people with the condition within your own country to communicate or network with.  

Being able to teach doctors and new medical students about her condition is rewarding 

“If they ever come across a rare condition in a patient, they might remember me and know little more. 

Lara says having a rare disease has taught her to remember how special life is, and she is encouraging other people with a rare condition to think the same.  

Don’t ever give up, don’t ever let yourself down. Keep on going. You’re special and life’s worth living no matter how rare your condition is. 

“Get married, travel the world – when Covid-19 is not around of course, or explore your part of the world in the meantime. And don’t ever doubt yourself because you can do it. Keep that head high and live your life to the fullest. 

 

Emery-Dreifuss muscular dystrophy mainly affects muscles used for movement (skeletal muscles) and heart (cardiac) muscle.  Joint deformities, called contractures, restrict the movement of certain joints and can become noticeable in early childhood, and most often involve the elbows, ankles, and neck.  Most affected individuals also experience slowly progressive muscle weakness and wasting, beginning in muscles of the upper arms and lower legs and progressing to muscles in the shoulders and hips. The rare genetic muscle disease usually shows up at about 10 years of age. The most common form only affects boys, but other forms affect both boys and girls. There are 11 known cases of Emery-Dreifuss muscular dystrophy in New Zealand, or 0.26 per 100,000 people.   

* Lara is sharing her story in the lead up to Rare Disease Day. The international day aims to raise awareness amongst the general public and decision-makers about rare diseases and their impact on peoples’ lives. Rare Disease Day takes place on the last day of February, a month known for having a ‘rare’ number of days. 

Photos: Jackie Stewart


For more information please contact:     
Melanie Louden 
Communications and Marketing Advisor 
Muscular Dystrophy Association of New Zealand 
027 509 8774 
[email protected]