Neuroacanthocytosis community

Neuroacanthocytosis is a group of four severe movement disorders that have similarities with Huntington’s and Parkinson’s diseases. There are no cures-yet-for these diseases, but that does not mean that we are helpless. Here are stories of what patients and their families do to help one another and encourage doctors to hurry in their search for a therapy.

Confirm your diagnosis: “My gift” by rdc-team published 10 days 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 ...

Reach out to other patients by rdc-team published 11 days ago

Sharing the experience and emotion of coping with neuroacanthocytosis brings insights, understanding and strength to the whole community of affected families. Ann Lippincott, mother of the late Marika Ann Critelli who died in November 2009, showed this in the insightful and beautiful poem which she wrote shortly after Marika was diagnosed with chorea-acanthocytosis.

Marika Ann Critelli, Sa...

Give your friends a chance to support the search for NA therapy by rdc-team published 12 days ago

Gill and Gordon Parry taught school in North Wales in the UK and had three children, Sian, Mark and David. Behind Gill and Gordon’s leadership the village and their families and friends gathered round to help when tragedy struck. In 1994 they organised the Hawarden Trek to raise funds for research into epilepsy, a condition suffered by their daughter Sian.
By the end of the 1990s the Ha...

Support and contribute to research by donating blood by rdc-team published 13 days ago

Ernesto Montero from Moraleja in Spain’s Cáceres province is the healthy brother of a family that has been cruelly affected by chorea-acanthocytosis. He, his mother and three affected siblings, David, Mario and Pilar live in a small town a long drive to a medical centre. Ernesto and his mother have the enormous job of caring for three adult patients with little support. All three siblings ...

Consider deep brain stimulation by rdc-team published about 1 month ago

At the age of 32, following the birth of her first child, this mother began to bite her tongue and lips involuntarily and to notice that movements are awkward. Involuntary movements in her right foot that sometimes turned her foot inward caused frequent falls and difficulty in walking. She had a second child four years later. Her problems continued with an irregular gait caused by lack of contr...

Living with NA, I have NA - it doesn't have me by rdc-team published about 1 month ago

At age 26, Alex developed an involuntary, irregular grunting. This is followed by slight difficulty in walking caused by the toes turning uncontrollably inward. The difficulties increased; walking became a great burden with frequent falls. Eighteen months of attempts at diagnosis in a world-class medical center showed only negative results. In two years, the condition deteriorated and walking ...