By Rachel, Tracheobronchomalacia, ehlers danlos syndrome, United Kingdom, February 6, 2020
Hi I'm Rachel since the day I was born I always struggled with my breathing my mum was always told as I child I just had extremely bad asthma, as I got older things got a lot worse with my breathing I was spending most of my life in hospital again struggling to breathe I was missing out on spending time with my nieces and nephew because I physically couldn't breathe, I was under respiratory, ENT and then finally I was seen at the North West Lung Center where I had so many tests done I was finally given the name Tracheobronchomalacia I didn't have a clue what this was and I didn't even know how to pronounce the name my consultant said to me your airway is 80% collapsed but there is not many cases in the UK, I was so great full that I finally had a name to my breathing issues I am still working with my consultant to find out what is going to help me best to stay out of hospital longer I hope that one day they do find a cure for it.
I also have a condition called Ehlers Danlos Syndrome which affects all of my joints meaning the dislocate with just simply moving the wrong way or even opening my mouth to eat, I am now a full time wheelchair user as I can no longer walk because of it I am also hoisted due to the lower half of my body dislocating through standing, it also affects my muscles in my bowel and bladder I now have a permanent colostomy due to the muscle in my bowel not working.
I might have these conditions but they definitely don't have me I always take every day as it comes.
Thank you for reading my story to the end, just remember no matter what your condition you are beautiful, loved and you are you nobody can take that away from you.