My response to the Government’s plans for shielding

My response to the Government’s plans for shielding

My son, Bertie, who is eight, has Ullrich congenital muscular dystrophy, and we have been shielding for more than three months now. The Government has repeatedly comforted the general public by reiterating it is usually only the “clinically vulnerable” who are in serious danger from COVID-19. This has stoked immense fear among families like ours.

How the gym shaped my journey towards body positivity

One of my biggest struggles in connection with having Ullrich Congenital muscular dystrophy over the years has been my body image, which has a direct impact on my mental wellbeing. Difficulties around finding clothing that suit my body shape has a direct negative impact on my body image and the absence of people who look

Keep moving forward

Carrie Aimes, 28, has Ullrich congenital muscular dystrophy and is a member of our  network of young disabled campaigners. In this personal blog, she looks back on her decision as a child not to have corrective surgery for her scoliosis. I was offered corrective scoliosis surgery at the age of nine. Back then I was able

We can and we do. Highlighting the ability in disability

I’m presently in the process of recruiting new carers. Many applicants have expressed their disbelief at how much I do for myself. One even congratulated me, “well done you!”, to which my current carer responded with a subtle mocking applause. Why are people so surprised at my level of ability? Do they see me in

My life with Ullrich congenital muscular dystrophy

Today (28th February) is Rare Disease Day, the chance to raise awareness of conditions affecting around 3.5 million people in the UK. Around 75 percent of those living with a rare disease are children. At Muscular Dystrophy UK, we bring together people living with one of 60 different rare and very rare muscle-wasting conditions. Most of

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