Hear Our Community Voices.
Community Member: Rebecca Peiper.
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.
August 2025 Community Voice is that of Rebecca Peiper. Read below Rebecca’s words in our easy read, short-form Q&A style.
Tell us a little about who you are? (separate from HCTD)
I’m a Mum of two. My husband has a mighty beard. I’ve discovered writing is my meditation.
Can you tell us what type of heritable connective tissue disorder (HCTD) you live with?
I have been given the diagnosis of Hypermobility Spectrum Disorder – HSD.
What is your favourite way to explain your HCTD to others?
It means the connective tissues throughout my body are not the same as is assumed. And connective tissues are the building blocks. Where others may have strong pipes like a garden hose, my vessels are stretchy, more like balloons, and that can make them less efficient at getting blood where it needs to go.
When it comes to the musculoskeletal system: if others had elastic bands connecting their bones and assisting movement… my elastic bands stretch too far before tension kicks in and therefore movement has to be considered to make sure things don’t fall apart.
Testing my blood doesn’t show anything.
Taking x-ray’s shows my bones are where they need to be.
Checking out my heart will show it is strong.
These individual, testable parts, are not the problem, and yet they all suffer when the connective tissue struggles to provide the structure required to support function.
How did you find out you have a HCTD?
It took several years and a lot of dismissal, my own research and persistence. Finding an HSD/EDS aware provider was critical.
Did you have signs of a HCTD during childhood? If so, what were they? Or what were some of your first signs of HCTD?
Yes, looking back, I had multisystemic signs that remained under the radar. Like asthma and respiratory issues that did not respond to the usual treatments. Bowel complaints that thankfully remained more annoying then troublesome, and constant sprains and strains from everyday activities.
In what way does your HCTD impact your everyday life?
I have to consider all aspects of my day, structuring everything around how my body will cope. From how I get up in the morning to what I wear. Clothes can’t be at risk of overheating me or leaving me cold, they have to be easy to get on and off to avoid strains and subluxations. That one example of getting dressed has a dozen aspects I could speak to, and every task of my day comes with its own list. Even breathing needs consideration!
What kinds of adjustments or supports have helped you manage day to day?
This list would be pages long, but knowledge and acceptance have been my greatest tools. All the adjustments have a major impact on my function. Taking me from suffering with HSD to thriving with HSD (albeit with some waves of suffering that comes with having a dynamic and still under resourced condition). It would be amiss of me to not mention the sacrifice of my husband in giving up all his scented beard oils. Fragrances are a big trigger for me.
What has your experience been in accessing what you need? Has this changed across your journey?
It has been an eye opening and damning reflection on how far we have to go as a society. More awareness is filtering through but there is still a long way to go. I don’t yet feel like I can access reliably safe and timely care.
What would you like others to know about your HCTD?
That HSD is a body wide issue that impacts on every system including autonomic functions which we have no control over.
But, my connetive tissues are not my biggest barrier; the assumptions, biases and strucutures that neglect chronic illnesses have been.
If you would like to discuss sharing your journey and experiences of life impacted by HCTD please email us via hello@ctdna.org.au