Our Members - Their Stories

MDANZ members share their personal stories of living with a Muscular Dystrophy condition. 

Many more adventures to be had

18 March 2021
Melanie Louden
Many more adventures to be had

A “zombie-ish” moment in the lead up to a major solo art exhibition led to Judy Smith’s ocular myasthenia gravis diagnosis. She writes about living with the condition and her love of life.


"Don’t ever give up" - Lara Elliott

19 February 2021
Melanie Louden
"Don’t ever give up" - Lara Elliott

Having a rare disease hasn’t held Lara Elliott back from making the most of her life and fulfilling her dream to become a mother. She shares her story with Melanie Louden ahead of Rare Disease Day on February 28, 2021.


Rare disease teaches Louise to be kinder to herself and others

09 February 2021
Melanie Louden
Rare disease teaches Louise to be kinder to herself and others

From a GP who said it was all in her head, to facing her fears, Louise Davy is determined not to let the rare disease she has limit her. She shares her story with Melanie Louden ahead of Rare Disease Day on February 28, 2021.


Rolling with the punches and dancing to her own trumpet

12 January 2021
Melanie Louden
Rolling with the punches and dancing to her own trumpet

When Freda Evans was diagnosed with Pompe disease more than 30 years ago she decided then and there that the condition would not rule her life. Anything people said she couldn’t do, she has done – including travelling the world alone.


The sky’s the limit for Dylan

08 January 2021
Melanie Louden
The sky’s the limit for Dylan

Dylan Schneider explains how the Duke of Edinburgh’s Hillary Award is opening up new, and impressive, opportunities for him.