Alternating Hemiplegia (AHC) Community

Learn how others live with Alternating Hemiplegia (AHC) and share your story

She's grown so much, but her potential is far greater

by nzkellyscott published 5 months ago

I met Claire a while after meeting my now husband, Paul. We looked after her so his parents could have a break together. He was fiercely protective of his sister. She needed help eating, dressing, bathing. Claire is now in her 30's. She can eat, dress, and toilet herself. What else can she achieve? Claire has grown so much as a person in the decade I've known her. From someone who y...

Eliot's Journey

Eliot's Journey

by Eliotsmama published 5 months ago

From pseudo-tumor to Alternating Hemiplegia of Childhood (AHC) This is Eliot Liam's path through life as a short summary. Eliot Liam was born in December 2010. At the end of December everything began to get a little difficult. Eliot screamed and screamed and didn't stop. All there was for him was screaming, eating and sleeping. Furthermore he NEVER never lay still and his arms and leg...

Living with AHC - Kathleen

Living with AHC - Kathleen

by legan published 6 months ago

Kathleen's story of living with AHC from birth to 22 Kathleen was born four days late but not soon enough for me. She weighed in at 8lb. 13oz., a pound and a half more than my other two children. My pregnancy was uneventful however at about six months, I complained often that Kathleen did not move as much as her siblings. I figured that because she was so much bigger, she didn’t have th...

5th Symposium on ATP1A3 in London

5th Symposium on ATP1A3 in London

by Cure AHC published 6 months ago


The 5th Symposium on ATP1A3 in Disease took place from 24-26 August in London, UK at the Institute of Neurology, with satellite events (including the IAHCRC Workshop on Common Data Elements, welcome reception, and social diner) at the Holiday Inn Bloomsbury (Coram St).There were nearly 100 researchers, clinicians, and patient advocates who attended. While there were no breakthroughs shared, ...

Amanda

Amanda

by martinaferrero published 7 months ago

Amanda is our daughter, she is two years old. When she was 10 months she was diagnosed with AHC. She started with symptoms since she was 4 days old. In the present moment, she suffers from episodes every 15 or 20 days. Amanda is a joyful kid, with a great desire to learn, she smiles to life. Amanda is 2 years old, when she was 4 days she had an episode difficult to describe, even for doctors. S...

Human Timebombs - Neuro Film Festival

by AHC International Media published 11 months ago


Human Timebombs is a documentary about Alternating Hemiplegia of Childhood (AHC) A rare neurological disorder caused by a mutation in the gene ATP1A3.
We peek into the life of Sunna Valdis, a 9 year old girl that lives in Reykjavik, Iceland and other children around the world diagnosed with AHC.
We will learn how MILLIONS of people with other disorders will gain from research and cure fo...

AHC

by johann2014 published about 1 year ago

Our son was born in June 2014. When he was three days old, they detected a nystagmus in his right eye during feeding. We thought it was an eye problem, as many people in our family have problems with their vision. However, the nystagmus occurred only in one eye, and it was not continuous, and his eyes were fine. In November 2014 we went to the hospital, where they found nothing. They sent me h...

Kim's story

Kim's story

by nightsong published about 1 year ago

Kim is 37. She was adopted at 4 months from Korea. She has had numerous diagnoses but nothing that explained all her symptoms. Kim has a chromosome deletion (1p13.3) and that is about all we know for sure. We are looking at AHC since she has so many of the symptoms but cannot find a neurologist who knows AHC well enough to diagnosis it. Most work only with children. Kim came to us as a "he...