Young Parkinson’s patient inspiring others through Parkinson’s UK and Next campaign

Having been diagnosed with Young Onset Parkinson’s aged 34, fashion designer Genna Douglas was left isolated and confused about how to get on with her life. To make sure no one else suffers a similar fate, she has teamed up with Parkinson’s UK and clothing giant Next to create a range of products that are raising both money and awareness.

The ordinary task of doing the washing up one day would prove to be a huge moment for Genna Douglas, after she noticed her hand was not moving properly.

While on maternity leave having just had her second daughter, doctors originally thought the problem was a damaged nerve and she was placed on a course of medication to deal with it.

This wasn’t enough for Genna as she knew something still wasn’t right.

She eventually got through to a neurologist, who diagnosed her with Young Onset Parkinson’s. She was 34.

Genna told NR Times how stunned she was by her diagnosis.

“I was completely shocked,” she said. “I didn’t know anything about Parkinson’s because it’s not in my family. I’ve never even met anyone with it.

“I didn’t know where to start with my questions.

“My first concern was for my children, if I’m going to be around for them in the future.

“It was all a bit of a whirlwind and I didn’t ask everything I wanted to ask, so I walked away with a prescription and millions of questions.”

The lack of information around younger people with Parkinson’s was what Genna felt was most damaging.

“When I was diagnosed I felt really lonely, I felt like I didn’t know who I could talk to about it and I thought I was the only person my age that had Parkinson’s.

“All the information pointed to the older generation.”

Research suggests that Genna is far from alone in experiencing this isolation; with around 24 per cent of patients being told they were too young to have the disease according to Parkinson’s UK.

Meanwhile, 87 per cent of people with the condition have faced some form of discrimination or harassment, with this figure rising to 99 per cent among those aged 40 to 50.

Genna said: “To look at me, people would not realise that I have Parkinson’s a lot of the time because I don’t have an obvious tremor like most people do.

“It is not the only hidden disability, there are hundreds out there. Everyone has their own kind of struggles in life, if you see someone struggling, just be patient and be kind.”

Genna is passionate about addressing this stigma, and is taking action through her role as a fashion designer for clothing giant Next.

Having been at the company for 15 years, she is now helping raise money for Parkinson’s UK, the country’s biggest charity related to the disease.

The new range from Next and Parkinson’s UK

Genna has helped to design a range of products that simply promote positivity and the ability to be yourself.

Launched just before World Parkinson’s Day, the t-shirts and tote bags feature bright designs and fun slogans, with 100 per cent of  profits going to the charity.

Genna was keen to use the campaign to bring Young Onset Parkinson’s to the forefront of conversation and showing that it is not simply an age related condition.

“Anybody can get Parkinson’s, young or old, so we want to try and raise the awareness that you don’t just have to be an older gentleman to get it.

“On the T shirts themselves they say ‘if nothing else, be yourself’ and that’s really important for people with Parkinson’s, as they can struggle to open up to family and friends. I think the message of trying to be honest with people about how you’re feeling is really important.”

She is also hoping it will play a role in improving support for those who are diagnosed with Parkinson’s from a young age.

“I want to try and get the message out there that you can get Parkinson’s at any age and I’m working with Parkinon’s UK to try and make the support for younger people better and more tailored.

“The help needs to be more specific for people of a working age. I work, I’ve got kids and a mortgage, I’ve got different responsibilities to somebody who’s older and perhaps retired.

“I think it’s really important that the support is there for people like myself and also for people to talk about it because I wasn’t aware you could get it so young. I’m sure there’s lots of people that live with it that don’t even know they have it.”

Genna has never shied away from talking about Parkinson’s, even when it came to telling her two young daughters about it.

“I’ve never hidden it from them,” Genna said. “I’ve always spoken about it around them.

“Everybody has different symptoms so it’s very difficult to explain to young kids, but they do know that I have Parkinson’s and they do know that I struggle with my arm and I get tired.

“Because I do quite a bit of advocacy for Parkinson’s UK they hear about it all the time but it’s really hard to describe Parkinson’s and what condition is because to be honest I can’t describe it.”

This discussion around the disease is crucial for those living with it. The campaign between Next and Parkinson’s UK is a step in the right direction but Genna has more ideas to help younger Parkinson’s patients.

The charity’s future work will have a much broader outlook on the condition, with plans already being made to produce support packages tailored to patients of different ages and genders.

This will make sure no one goes through Parkinson’s alone, which is the kind of support Genna says she would have liked to have when she was diagnosed.

“I wish I had somebody that had said to me it’s not the end of the world, you need to live your life now enjoy it because you don’t know how fast it’s going to progress.

“No one can tell you that, you just need to make the most of what you’ve got.”

The Parkinson’s UK t-shirt range is available for purchase from the Next website.