Today is Rare Disease Day. I’ve written lots on my rare condition and also Star’s condition, but today I wanted to write about getting help when you are rare. Star Way back in 2013, Star woke up one day with a wonky neck. I took her to the GP who said to take her to…
elhers danlos syndrome
X-rays and Broken Bones
Me I’ve only ever broken one bone, my nose. Can that be counted as a broken bone even, isn’t it just cartilage? When I was about six years old I was leaning over my Nan’s fence at the top of her steep front garden. I think I’d spotted a bug or something just below and…
Zebra Child of a Zebra Mum
I have to admit, my daughter, Star, has been a zebra longer than me. A medical zebra I mean, someone who suffers from a rare condition. The problem with rare conditions is that Doctors tend to look past them and blame something else. They are looking for horses, not zebras. Star’s problems started when she…
Schoolday Trials and Tribulations Part Two – Mainstream Fail
Star is the third eldest of my children and already she has made it through mainstream school the longest. I do wonder though if it will last as we have worries on a weekly basis. I cannot fault her school, they do so much to help her and never expect too much from her. Only…
One in a Million (Or Maybe Two!)
When I was born I was a bit of a late addition, my brothers were already in their teens. Not only was an extra surprise, I was a girl and my Mum and Dad were thrilled. So were my brothers (I think!) You could say they thought I was one in a million! My life…
