Keanu’s Story – a story of Juvenile Epilepsy.
Stacey Smiley talks about her son, Keanu's, journey with epilepsy from the age of 1 to now, 5 years later. She talks about his diagnosis, what impact it had on Keanu and about discovering the epilepsy was caused by a CHD2 gene mutation. Stacey also gives some useful tips on how to interract with people with hidden disabilities.
May 17 2020Read Blog
A story about Myalgic Encephalomyelitis and hidden illness. Gemma Everson talks about her husband’s diagnosis of Myalgic Encephalomyelitis; how it impacted on her family and led her to write a children’s book. Our story began in July 2017. We had just welcomed our second daughter, Gracie, into our family and life was seemingly perfect. I …
April 9 2020Read Blog
Mitrofanoff – what??
By Aimee King I have just had yet another exhausting conversation with a medical professional who knows nothing about my mitrofanoff, telling me all about it. Now I understand that not many health care workers will know about my condition, but why not? something like a simple UTI which, trust me, I know a lot …
March 17 2020Read Blog
Rodney, the hare that didn’t care (but he did really)
Gail Crampton talks about her book, Rodney the hare that didn’t care (but he did really). She explains why she wrote it to help children with hidden illnesses and medical conditions, and how important it is. It started with Crohns Rodney Meadow-Hopper, The Hare Who Didn’t Care (but he did really), was released at the …
March 4 2020Read Blog
Moles Can’t Play Hide and Seek
Astrid Middleton describes her journey with the genetic eye condition retinitis pigmentosa. She also describes her and her son's attitudes to their neurodiversity and how they own it. This is what prompted her to write children's stories about being included and she shares one with us here.
March 2 2020Read Blog
Crohn’s Disease, diagnosing my daughter.
by Gail Crampton Gail Crampton talks about the journey to diagnose her daughter with Crohn’s disease and why it has led her to campaign and write a book to help others. Crohn’s – it started with stomach pains When my daughter, Isabelle, was 6 she began having severe stomach pains, nausea and no appetite. It …
February 16 2020Read Blog
Tube feeding, my experience by Sam
14 year old Sam shares his experience of tube feeding and how it has impacted on his life. Tube feeding – first an NG tube I was 7 yrs old when I had my first feeding tube, this was because my body couldn’t absorb all of the essential nutrients that I needed in my diet, …
February 12 2020Read Blog
Diagnosing Ehlers-Danlos Syndrome
Hi, my name is Caroline Bailey and I have Ehlers-Danlos Syndrome, a rare and difficult disease to spot . I and 48 years old and have been married for 25 years. My 3 children are Samuel age 24, Robyn age 20 and Darcey age 15. I also have a stepdaughter age 37 and 2 step …
February 6 2020Read Blog
Discovering Ehlers-Danlos Syndromes
Caroline Bailey talks about her journey to discovering she had Ehlers-Danlos Syndromes (EDS). When I was a little girl I was a little quirky. I remember walking to school with my brother and my mum saying “if you stand on a crack you’ll marry a bat and a rat will come to your wedding” 😂😂. …
February 3 2020Read Blog
Autism and Accessibility
by Adam Barrett, Access Social Ltd. Being an older brother I have always been very protective of my little sister. (there’s 4 years difference between the two of us) This protectiveness has definitely been increased to biblical proportions due to her disability. Look at her the wrong way, use inappropriate language in her presence, I’ll …
January 22 2020Read Blog