Boy with Giant Axonal Neuropathy (GAN) Celebrates Curly Hair Day at School

May 2 is Curly Hair Day—a day to celebrate the beauty of waves, coils, and curls. But for one fifth-grader in Canada, Curly Hair Day stands as a way for him and his classmates to raise awareness of a rare condition called giant axonal neuropathy (GAN). 

Joelle Tomlinson reports in Global News that Julian Buyks, a bubbly fifth-grader who loves skiing and being with family, is one of fewer than 100 people across the globe who have been diagnosed with GAN—and one of just two people living with GAN in the Canadian province of Alberta. 

To help raise awareness of giant axonal neuropathy, his school community has rallied behind him during Curly Hair Day. His school began wearing curly wigs or curling their hair before school to show solidarity with Julian in 2023. This year, they did the same. Giant axonal neuropathy changes the structure of keratin intermediate filaments in the hair. As a result, people with GAN often have dull, tightly-curled hair that differs from their parents’ hair color. 

Julian’s family continues to work towards advancing GAN research and finding a cure. In the meantime, they are very grateful for the support Julian has been shown.

What is Giant Axonal Neuropathy (GAN)? 

Giant axonal neuropathy is a rare genetic disorder caused by a GAN gene mutation. Normally, this mutation encodes for the production of the gigaxonin protein. In GAN, this protein becomes abnormal, causing axons (a portion of nerve cells) to swell with neurofilaments. This gives them the appearance of being “giant,” hence the name. When the axons are too large, they can’t function the right way, leading to degeneration and dysfunction. 

Symptoms often begin before age seven and worsen over time. Both the central and peripheral nervous systems are involved. Outside of the hair difference, people with GAN may show signs of: 

  • Difficulty walking 
  • Ataxia (impaired muscle coordination) 
  • Constipation
  • Heat intolerance
  • Hypotonia (low muscle tone) 
  • Loss of strength, sensation, and reflexes in the limbs 
  • Difficulty breathing or swallowing
  • Scoliosis (abnormal spinal curvature) 
  • Neurogenic bladder (issues with urine release)
  • Reduction/loss in the ability to sweat
  • Vision and hearing difficulties 
  • Intellectual disability
  • Seizures
  • Dementia

Right now, there are no cures for GAN. Treatment is symptomatic and supportive.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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