Millie-Rose, 17, lives in London with her parents. She has Ehlers-Danlos Syndrome which affects connective tissue and causes her chronic pain, alongside frequent dislocation of joints and many other symptoms. Ehlers-Danlos affects every individual in different ways and there are six subtypes within the disorder. Millie-Rose’s type is hypermobility. Due to the frequent dislocations of the joints in her legs and hips she often relies on a wheelchair to get around on a day-to-day basis.
Millie-Rose said ‘Originally it was difficult for me to get diagnosed as the doctors weren’t sure what was wrong with me. When I was 11, I had a bad case of strep throat and I couldn’t get rid of it for over a year. Soon after that I noticed all sorts of changes in my body. My skin became extremely elastic, I started to bruise easily and I had extremely loose joints.
"When I went to the doctor’s it got even more confusing. My symptoms never seemed to match up with the diagnosis. One day I was told I had juvenile arthritis and then the next day I was told that it was psychosomatic. Thankfully my Mum took it upon herself to do research online and we were able to provide enough evidence to my doctor which led to me being referred to a geneticist and them finally diagnosing me with Ehlers-Danlos Syndrome at the age of 13.
“Over the next couple of years it became more extreme and my joints started dislocating. At first it was only my fingers, wrists and shoulders that used to occasionally dislocate. But then it became a thing where any random body part, from my ribs to my scapular could fall out of place. It then started to affect the joints in my legs and that’s when it got really bad.
"I remember one of the first times my hip dislocated as I was just walking down the street with my mum and dad – it was absolute agony. The worry of something that happening made me feel a lot less confident about going out on my own.
“I was given crutches by the NHS which did help a little bit but they were quite uncomfortable under my arms. I’d really struggle to keep up with people when I am using them. Plus they always fall all over the place. They are really awkward. But they didn’t stop my knees and ankles still kept dislocating so eventually my rheumatologist referred me to wheelchair services
“I was given a standard manual wheelchair from the NHS at the age of 15. It was big, wide heavy, clunky and uncomfortable. I couldn’t really push myself around in it as it was so heavy, it was a real struggle and strain on my arms meant that I’d dislocate my shoulders and elbows trying to use it. It actually limited my independence and I would have to get my parents to push me around or at school I would ask my friends. I had to rely on everyone else to get me from A to B and as a teenage girl it was extremely frustrating. I had no confidence in myself with that wheelchair and it made me more afraid to go outside.
“I ended up missing a lot of secondary school when I was younger because there were days where at my worst, I couldn’t bring myself to get out of bed knowing that I would have to try pushing myself in that wheelchair or use the crutches. As things got worse, we went back to our local wheelchair services in Bounds Green and someone from the NHS actually ended up mentioning Whizz-Kidz
Millie-Rose’s mum, Elisa, says “ When we went to Whizz-Kidz we had such a positive experience. One of the things we had been told in the past was ‘Millie-Rose can’t get everything she wants’ but the things we requested weren’t ‘wants’ they were ‘needs’. Having a wheelchair that fits isn’t a luxury, it should be a right. At Whizz-Kidz they listened and responded to Millie-Rose's individual needs and when she received her wheelchair, everything was personalised specifically for her”
After her assessment, Whizz-Kidz provided Millie-Rose with a lightweight active manual wheelchair, with e-motion wheels. Millie-Rose explains “I remember I was being measured for things I wouldn’t have even thought needed measuring but Whizz-Kidz were keen to make sure everything fitted correctly. To top it off I was even able to choose the colour of my chair, which is matte black, looks super cool and stylish, it fits me perfectly. I still remember the day I got my wheelchair. I was so anxious but I couldn’t wait. I was just sat there thinking about the possibilities! The mobility engineer, Dean, brought the chair up and I couldn’t stop smiling
“This new wheelchair from Whizz-Kidz has changed so much for me. It’s light enough for me to easily push myself - I do not have to wait around for someone to push me around everywhere. The motors in the e-motion wheels give me an extra boost which takes the pressure off my arms and allows me to go really fast. Before I used to struggle to keep up with family and friends but now they struggle to keep up with me. The motor gives me that extra boost when I am wheeling myself which means my arms aren’t as prone to dislocating’”
The new wheelchair has not only enabled Millie-Rose to go to college, but has given her the confidence to begin travelling – she is planning to take a gap year volunteering overseas later this year. Millie-Rose is even planning to go travelling later on this year on her own. In her old wheelchair she had never boarded public transport by herself before.
“I can’t wait to travel abroad on my own. I just want to prove to everyone that I can do it. I am really looking forward to it and if I am being honest, without this wheelchair there would have been no way of me even dreaming about doing such a thing.”