Health survey up and running
UNIVERSITY of the Sunshine Coast honours student Alyce Tancredi is determined to live a fit and healthy life despite suffering a rare and debilitating genetic disorder.
To underline this, she launched her national survey on the condition the same weekend she completed a 21km run as part of the Mooloolaba 70.3 Half Ironman.
Ms Tancredi, 22, was delighted to receive more than 100 responses to her USC survey on the first day it opened online, indicating the eagerness of people with Ehlers-Danlos syndrome to increase understanding of the often-misunderstood condition that causes a variety of symptoms.
After a lifetime of problems ranging from gut issues to shoulder and knee dislocations requiring multiple surgeries, Alyce was diagnosed with hypermobile Ehlers-Danlos syndrome in 2016, her first year of a Bachelor of Dietetics at USC Sunshine Coast.
“It was a relief to finally get a diagnosis from a rheumatologist, but then I learned there was no cure, only management for it,” said the Noosa Aquatic Centre squad swimmer.
Alyce, of Tewantin, said the survey was believed to be the first on the dietary needs of Australian adults with EDS and hypermobility spectrum disorders.
Its purpose was to gather information for analysis to help dietitians treat people with nutrition-related symptoms.
“The survey aims to find out what is happening in this adult population – are they malnourished, overweight, nutritionally deficient?”
The survey is open to people aged over 18 who have Ehlers-Danlos or hypermobility disorders.