Neuroacanthocytosis (NA) Community

Learn how others live with Neuroacanthocytosis (NA) and share your story

McLeod syndrome

by yddib published 7 months ago

Neuroacanthocytosis has came into my life uninvited. One son has been told he has this the other has not yet been diagnosed but it seem like he has it. I do not understand this illness. There is supposed to be only 150 people in the world that have it and that scares me because everyone knows the fewer people that have it the less research.

I have 2 sons that are unwell. One son is worse th...

First ever meeting of NA patients, families and carers at Ann Arbor conference

by Ginger Irvine published 9 months ago

The first ever meeting of Neuroacanthocytosis patients, families and carers was held at the University of Michigan in Ann Arbor, Michigan in the US in May was a tremendous success. It was sponsored by The Allergan Foundation, Neurocrine Biosciences and the Advocacy.

The group photo above includes both patients/families and researchers/clinicians.

Thirteen patients and nineteen ...

Confirm your diagnosis: “My gift”

Confirm your diagnosis: “My gift”

by RareConnect team published 11 months ago

I describe NA as “my gift” that began to reveal itself in the clues so small that I ignored them. First my speech had minuscule slurs that I attributed dehydration from running. I just drank more. When I proposed to Isabel, she smiled her beautiful smile and said, "Of course I'll marry you!". During our dinner, I ignored it in my happiness another subtle clue. My tongue ...

Pilar tiene 5 hijos, 4 de los cuales tienen neuroacantocitosis

by Canal Extremadura published about 1 year ago

La historia de PILAR es única en Extremadura, la palabra clave es neuroacantocitosis, una enfermedad genética degenerativa que afecta a cuatro de sus cinco hijos. Esta mujer de Moraleja ha tenido que vivir cómo uno tras otro, sus hijos han perdido la movilidad y el habla. Sus vidas han cambiado por completo, PILAR reivindica más investigación para frenar un...

A tribute to Glenn Irvine

A tribute to Glenn Irvine

by adrian_danek published over 2 years ago

Glenn Irvine had founded the Advocacy for Neuroacanthocytosis Patients and was an inspiration for those affected by chorea-acanthocytosis, McLeod syndrome and related neurological conditions that may be associated with abnormally spiked red blood cells (acanthocytes). Glenn Irvine who had passed away March 6, 2015, at his home in London, for 15 years had been a friend of many of us who are inte...

The Effects of My Disease

by Edwin published over 2 years ago

Chorea-Acanthocytosis - Choreiform Disorders [Springer Video Atlas]

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The history of life

The history of life

by juliobello published over 2 years ago

I'm Julio, I'm 37 years old and 5 months ago I was diagnosed with neuroacanthocytosis. This is my life
I´m Julio, 37 years old, and 5 years ago I was diagnosed neuroacanthocytosis.
At the age of 7, I suffered from epilepsy and had to take Depaquine 500 mg and later continued with 250 mg until the treatment stopped at the age of 13 when the epilepsy disappeared. I continued a normal ...

My story with Neuroacanthocytosis

My story with Neuroacanthocytosis

by Peppe published over 2 years ago

I'm Francesca, Giuseppe's wife. My husband has neuroacanthocytosis in the advanced stage now. Our ordeal started at age 35. He couldn't express himself well..he was shaking...biting his tongue..feeling agitated. He couldn't swallow. All these symptoms were exchanged for depression symptoms during the testing.

In 2010, he was hospitalized in Gemelli hospital in Rome. After...