My life with Ullrich congenital muscular dystrophy

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

Mamma mia, Meryl has a point!

My name’s Connor, I’m 23 and I have congenital muscular dystrophy, which means I use a wheelchair full time and have muscle weakness throughout my body. At the Golden Globes awards on Monday night, the actress Meryl Streep gave a powerful speech and it made a lot of sense to me. Meryl Streep said: …there

My Benefits Battle

The post came through the door and my boyfriend passed it to me to open. There was a letter from the DWP saying that Disability Living Allowance (DLA) was being replaced by a new benefit called Personal Independence Payment (PIP). It said I was eligible to receive the forms which they would send out soon.


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