News and stories

The latest news from Acrodysostosis Support and Research, and stories from our community

"We wouldn’t trade these last 21 years for anything!"

Baylee Stires Ever since Baylee came in to this world 21 years ago, she has been one surprise after another. My pregnancy with her was...

My name is Peter Murphy and I grew up in a small town called Carver which is located near Cape Cod, Massachusetts. I met my wife Susan in...

Francesca May was born August 2015 weighing 6lb 10oz and completing our family of four. Francesca was always a very quiet baby, very...

Hi, my name is Angela Shaye Benson. I’m 20 years old and I have Acrodysostosis. When I was a kid my family didn’t know why I stopped...

Pedro today is 13 years old and although he has gone through many medical studies; blood tests, x-rays, resonances, small surgeries, he...

Italian version (it is in English below) Aurora è nata prematura 14 anni fa, con un peso di kg. 1.333 a 35.4 settimane di gestazione. Era...

Georgie was 4 when she was diagnosed with acrodysostosis. At 1 years old she had an emergency adenoid tonsillectomy and many exploratory...

Firstly I'll introduce my self, I'm Francesca’s mum, Kim & we're UK based, and new to thing blogging life so let's see how we get on!...

Riley was born on the 7th February 2013 by emergency caesarean section at Nottingham City Hospital 6 weeks early. The caesarean was...

Baylee Stires Ever since Baylee came in to this world 21 years ago, she has been one surprise after another. My pregnancy with her was...

Hi, I'm Anna Louise Wood. I am 15 years old, nearly 16 - not that I'm counting or anything 😂 I have acrodysostosis type 1 with hormone...

My name is Brie Kearney and I am twenty six years old. I was diagnosed with Acrodysostosis type 1 with Glucose and Hormone resistance in...

Madeline was born on November 8th 2010 in Philadelphia, Pennsylvania by emergency c-section full term at only 5lbs and 18 1/2 inches...

My name is Peter Murphy and I grew up in a small town called Carver which is located near Cape Cod, Massachusetts. I met my wife Susan in...

Hi, my name is Jillian and I have Acrodysostosis type 1. Some health issues that I have with it are short height, small hands and feet,...

Hi, I'm Jordan (@callmejords) and I am 18. I was diagnosed with Acrodysostosis type 1 with related pseudohypoparathyroidism and many...

Our daughter Francesca, who we affectionately refer to as Frankie, was diagnosed with Acrodysostosis Type 2 on August 9 2015 when just...