Leukodystrophy Awareness September

Leukodystrophy Awareness September

What is Leukodystrophy?

Leukodystrophy or the Leukodystrophies is a group of inherited genetic conditions that are characterised by the imperfect development, growth of maintenance of myelin or commonly known as white matter.

Historically, leukodystrophy diagnoses process was slow and poor and effective treatment only available for early stages of certain types of leukodystrophy.

However, over the years as technology advanced, there have been more treatment options available for those who inherit these conditions.

Advances in molecular techniques and improved insight into pathophysiology of individual leukodystrophies have led to therapeutics development include drug design and gene therapy. Nonetheless, all of these still rely on early detection to help prevent accumulate damage.

How Leukodystrophy affect people?

Brendan Wyborn was born in Townsville Queensland Australia on the 7th of March 1988. His life was like any normal little boy until he was about 8 years old. He moved to live in Hervey Bay Queensland and enjoyed fishing, playing cricket, his older Sister Emma and of course his family and friends.

His life started to change when his known standards for behaviour, schooling and general wellbeing decreased.

After many misdiagnoses and changes of doctors, he was finally correctly diagnosed, on the 10th of November 1997 at the Royal Children’s Hospital Brisbane, with Adrenoleukodystrophy (ALD).

His prognosis was poor as this destroyer of our young boys had rapidly advanced, and he was not given long to live.

He died in the Hervey Bay Hospital on the morning of Saturday the 17th of July 1999 aged 11.

So what is Leukodystrophy Awareness Months?

In September, every family who is affected by a leukodystrophy around the world start sharing their stories on social media. The #LeukodsytrophyAwareness and #turnseptemberblue hashtag are used to show the world that these families exist.

More importantly, to call awareness about Leukodystrophies and push for the advancement in research so that no family will have to feel the same pain again.

How can you help:

  • Share the words with your friend and colleague
  • Help by donating to Leukodystrophy organisation around the words.
  • Help us by donating $5 so we can keep operating and spread the awareness.

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