Teens/Adult – their own stories

My story – Johannes

My name is Johannes and I am from Munich, Germany. I was born in 1979 with ABS. My both hands, my left foot and one toe of my right foot are affected. Shortly after my birth, I almost lost my left foot. Nearly all fingers on my both hands were grown together. A doctor (now a respected doctor in the field of plastic surgery) of the university hospital in Munich “Klinikum Rechts der Isar” operated my fingers on both hands and left foot.

Read more My story – Johannes

Was told it was how you was born

Hi all I’m Paul. I was born in the UK in 1971 with abs affecting my hands and feet badly, after many surgeries through out my childhood I never seemed to be told the full story by my family.

Earlier this year I decided to find out more and started a Google search looking at hand and feet defects from birth and stumbled across amniotic band syndrome and wow what a massive slap around the face it was I was discovering a huge network of people out there in the world I never knew. 

Read more Was told it was how you was born

A Blessing in Disguise

Today I saw a photo and article in Parade magazine about the marvels of 3D printing. I read about a young girl’s condition called amniotic band syndrome. I realize that this is what happened to me!

I was born in 1955 with nubs for fingers on my left hand and rings around my toes and my right leg was twisted backwards at birth. I remember  hearing something about bands but never knew the name of the condition and I am almost 60 years old!

Read more A Blessing in Disguise

Circa 1965

I was born in 1965 with no fingers on my left hand. My whole life no one has been able to explain why this was. Now I know. In 1965 this wasn’t heard of. The hospital didn’t want to let me go, they wanted to run tests and figure it out.  As a child, I was made fun of and even my own parents didn’t think I could ever do anything. Today, I am a respiratory therapist. I had to invent a device to be able to intubate people because I couldn’t graduate without being able to.

Read more Circa 1965

born with ABS in 1949

 I was born in September, 1949.  At my birth, I had the high webbing between all of my fingers and toes.  The digits affects and how are:
~On my left hand, my pinky and ring fingers are missing after the first joint, my middle finger has most of the tip missing, and my index finger is missing at just before the last joint.
~The index, middle and ring fingers of my right hand were fused together, but the doctor separated the index and middle fingers at birth. 

Read more born with ABS in 1949

Chapin’s ABS journey

Our son Chapin was born on June 16, 1992 in Washington DC. He was our first child and I had a normal pregnancy (with the exception of some light vaginal bleeding at 8 weeks, but my OB-GYN was not concerned). When he was born four days after his due date, the nurses performing the APGAR were the first to notice his small hands and short fingers on both hands.

Our doctor told us this was a result of Amniotic Band Syndrome.

Read more Chapin’s ABS journey

Megan’s Story

Hello everyone! My name is Megan and I was born missing three fingers on my left hand, and also have a smaller palm on the affected side due to ABS. Fortunately, I have really good function in my hand and have had absolutely no trouble throughout life (I’m 30).

The hardest part of this defect was dealing with my own fears regarding what others would think while in highschool. In 30 years I can recall 3 times I’ve been made fun of.

Read more Megan’s Story

My Life | Reyna’s story

Hi, my name is Reyna. I am 43 mother with 3 grown children and I have ABS. I never knew what my condition was called until today when I saw it on my medical history chart at the doctors. Let me start out by saying that I will most likely make a few people angry by my statements to follow.

I am not “special”, I am not handicap or handicapable…. I am NORMAL, the best thing my parents ever did was to not treat me differently from my brothers.

Read more My Life | Reyna’s story

My story: Oliver Leett

My name is Oliver Leett and I am a recently qualified PGA Professional at Ross on Wye Golf Club. I have been working with Head PGA Professional Tim Hall for just over a year and I am exited for the bright future ahead.

I was born at Watford General Hospital in 1988 and I was unfortunate enough to be born with Amniotic Band Syndrome. Due to this symptom I have strange finger defigureation on both hands which can cause a limitation from time to time.

Read more My story: Oliver Leett

about Kim

I gave birth some 44 years ago. Her birth name, Kim. She was our first baby. I had never heard of amniotic band syndrome until Kim was born. It has been so long since giving it any thought at all. Happened to be discussing it at a party today. A guest mentioned that she had a friend whose child was born with the anomaly. Decided to look it up on the internet. Our experience was the same and not so much.

The amniotic band was like a rubber band placed between the thumb and 4 fingers of her left hand.

Read more about Kim