Hear Our Community Voices.
Community Member: Miette Rudolph.
Introducing Our ‘Community Voices’ Series.
At CTDNA, we believe there is power in sharing stories. Our Community Voices series, gives a platform to individuals living with heritable connective tissue disorders (HCTDs) to share their journeys, challenges, and triumphs in their own words.
Through these lived experience stories, we aim to build understanding, reduce isolation, and highlight the many different ways HCTDs can affect everyday life. Each voice is unique, and every story matters.
May is Ehlers-Danlos Syndrome and Hypermobility Spectrum Awareness Month.
Our May 2026 Community Voice is that of Miette Rudolph. Read below Miette’s words in our easy read, short-form Q&A style.
Tell us a little about who you are? (separate from HCTD) I am slightly dog obsessed, I love the beach and spending time with my family.
Can you tell us what type of heritable connective tissue disorder (HCTD) you live with? I have been diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS)
How did you find out you have a HCTD? My physio suggested I may have some form of connective tissue disorder based on my symptoms, after a lot of research and being put in contact with some really great practitioners I then received my diagnosis from a geneticist.
Did you have signs of a HCTD during childhood? If so, what were they? Or what were some of your first signs of HCTD? Growing up I have had many symptoms from a young age that were not taken seriously, like constant sprains and strains that took far longer to heal, easy bruising and heat intolerance. I also have another genetic condition, so all my complaints were put down to that. I think there was also a lot of ‘wait and see’ when it came to medical stuff, as my parents wanted me to live a normal childhood without constraints. My parents had never heard of connective tissue disorders and no medical professional ever suggested it.
In what way does your HCTD impact your everyday life? Having a connective tissue disorder impacts every aspect of my life. The most prominent way is having to be very mindful about how I move around and how I complete tasks, even around my own house. As I am at risk of spraining, straining or subluxating something, if I move in the wrong way.
What kinds of adjustments or supports have helped you manage day to day? I carefully plan my weeks at the start of every week so I can make sure everything I need to do gets done and that I still have energy and feel well enough to do other things I want to do, like catching up with friends. I also make sure I take regular breaks throughout the day, to prevent flare-ups. I have to brace my knee whenever I leave the house, and I have to tape or brace other joints to prevent injury or provide support to already injured joints.
What has your experience been in accessing what you need? Has this changed across your journey? Through the whole process of seeing countless medical professionals, it has been quite shocking how dismissive people are. I know now, that I can’t just see anyone when something happens, I have to see the people who know me and my condition in order to get the right care and advice.
What would you like others to know about your HCTD? My symptoms change day-to-day, so one day I could be doing completely normal activities and the next day I could be either on the couch or in bed unable to function properly.
If you would like to discuss sharing your journey and experiences of life impacted by HCTD please email us via hello@ctdna.org.au