Living with HEDS and AVCS in NZ

12/08/2026

Episode 4 - really hard to listen to.

I support caution around major vascular surgery, particularly with hEDS. I also agree that an anatomical compression is not necessarily an indication for surgery. But when my child could no longer eat, drink, walk, attend school or sustain herself without significant medical intervention (ie we were risking sepsis daily by being fed straight into her veins), then suddenly conservative measures and doing nothing is absolutely not a benign or risk-free option!!!

What struck me most on today’s podcast was that none of the doctors interviewed who argued against the surgery offered a meaningful treatment alternative instead for patients this unwell. If surgery is considered too risky, then tell me what is the clinical pathway for someone whose health and quality of life have deteriorated this severely? What would they decide if this was their own daughter?

I also don’t understand multiple compressions being dismissed simply because they are considered “too rare.” Rare does not mean never or impossible. The literature is finally starting to be produced about multiple compressions and hEDS let’s embrace it and learn. When the patients symptoms correlate with objective findings and are supported by multiple medical opinions, they deserve careful investigation and not a dismissal.

No Mum is asking for recklessness when it comes to their child. We’re asking for EVIDENCE, GENUINE TREATMENT OPTIONS, and EQUAL CONSIDERATION of the very real risks of not treating a profoundly unwell young person. 💔

We went to Germany because there are no other paediatric options available and my daughter could not wait until she had the adult options available because she was already skin and bone, she was unable to walk and deteriorating daily in a NZ hospital. We didn’t have the luxury of not trying the “risky” German surgery because we had tried conservative measures and avoiding surgery and I was watching her decline every day.

🧡Thinking of everyone who is currently in this position of having to decide with their own child what to do because the professionals can’t get agree.

Another young woman fights for her life in hospital while doctors' debate what they see on her scans. So how is it that different doctors can look at the same image and come to completely different conclusions?

06/08/2026

My eldest daughter had only been in hospital with symptoms for a few weeks when by chance I met one of Ruby’s friends who told me all about her, what a beautiful fun spirit she was, how much she had fought for her health, how beloved she was, how terribly she was missed. 💔

At that time I was so clueless and naive, I didn’t think my own daughter could possibly become as ill as Ruby in a NZ hospital under the NZ health system!!! How could such a thing happen in NZ to our young women?

Back then I thought surely Ruby’s death and the terrible heartbreak of her family was an anomaly that our country and health system would immediately acknowledge was absolutely unacceptable and the health system would learn and grow from there and change would happen? That our young women would not continue to die or live lives of suffering and agony unable to eat or drink but denied treatment and interventions.

I never could have believed back then that doctors would say to me that the conditions that cause these horrific symptoms that in most cases CAN be tested for and CAN be seen on the testing either EDS testing or AVCs testing AS THEY ARE PHYSICAL and CAN be diagnosed and CAN be treated and operated on were all irrelevant as they thought the issues are psychological.

Even if a patient’s condition is too severe or not suitable for surgery the denial of feeding interventions, pain relief and medical care, multidisciplinary treatment in particular is being denied daily for these NZ patients who like Ruby are being sent home with no treatment or plan to improve their quality of life, reduce their pain or prevent their deaths. It’s an absolute tragedy playing out right here at home in NZ.

Unfortunately back then when I met Ruby’s friend, I came to find that my own daughter was also eventually (through a long battle for testing after a diagnosis of pain hypersensitivity) diagnosed with the same conditions as Ruby and I came to learn in the following 6 months of my own daughter’s admission that not only was Ruby’s death and lack of treatment NOT an anomaly but that there are hundreds of others in NZ with the same condition being treated the same way and that the DEATHS of beautiful promising young women are occurring. BRUTAL DEATHS as Jo describes it, beautiful promising intelligent young women are living in agony and dying in agony here in New Zealand when the very same condition is acknowledged and operated on as near to NZ as Australia! It absolutely beggars belief that health NZ is turning a blind eye to this.

The only reason my own daughter is not dead yet is because I was fortunate enough before she got too sick to survive the travel and surgery to be told about an international doctor who was willing and able to operate on her and subsequently saved her life. We went into that surgery as a last resort and last hope. NZ had nothing to offer her, my child was going to die in NZ and we wanted to be certain that no matter what we had tried everything we could access and knew of at that time to try.

All surgery comes with risk. But the risks of travelling internationally for surgery on a severely unwell, malnourished and systematically failed patient especially once the patient has suffered for many years because the NZ health system blocks or delays access to international options increases that risk exponentially. We should have been able to save my daughter’s life here at home than take the additional risk and costs of international travel with a desperately sick child.

Now we live with the worry of the conditions at any time reoccurring due to her faulty connective tissue and NZ again failing to help us.

We have to do better as a country for our EDS and AVCs patients than “it’s all in your head” 🧡

Sending love to all who are suffering and to Jo and the families of all of these beautiful young women.

Rachel 🧡🧡🧡🧡

05/08/2026

Episode 3 is out today please listen and share 🧡

The Do No Harm episode of the RNZ podcast All In Her Head has been shared with you.

Health officials make a shock move that sends a ripple of fear through the EDS community. Anusha meets the family of Ruby Hill, who starved to death after a long battle with EDS. And we hear from the experts who say the evidence doesn’t stack up.

05/08/2026

Please read Ruby’s story 🧡🧡🧡🧡

At 23, Ruby Hill starved to death. A missed diagnosis nine months before raises deep questions about the medical establishment.

01/08/2026

The movie Complicated is a grim look at the reality of life with EDS and far too much of the movie felt too close to home 💔

28/07/2026

https://www.rnz.co.nz/news/health/824944/australian-surgeon-pledges-kiwi-patients-fees-towards-new-vascular-compressions-research

The new RNZ investigative series All in Her Head has prompted an Australian surgeon to put his Kiwi patients' fees towards new research into a controversial and unfunded condition.

21/07/2026

Highly recommend listening to Anousha Bradley’s RNZ podcast - first episode out today.

Podcast - https://www.rnz.co.nz/podcast/all-in-her-head/

Article - https://www.rnz.co.nz/programmes/in-depth-special-projects/story/2019041582/the-girl-who-couldn-t-eat

How does a young woman go from a high level soccer contract in the US to desperately unwell, in agony and unable to get help from the health system?

03/06/2026

If anyone wants to check it out, i’ve set up a fundraiser for EDS in matilda’s memory to celebrate her birthday this year. alongside friends i’m doing 17 winter plunges to raise awareness and money for EDS

My name is Jemima Thompson, I live with Ehlers-Danlos Syndrome, a cruel disabling chronic illness that has taken so much from me, including my little sister, Matilda. When a comorbid EDS condition (abdominal vascular compression syndromes) almost took my life in 2023 and rendered me unable to eat, ....

21/04/2026

3 years is a long time. People who know me now, don’t know me from mygivealittle or the news articles. They wouldn’t know there was anything wrong with me unless I showed my stomach with my surgical scars and my g-tube. I am beyond grateful to have a life where my illness no longer predetermines my abilities. Everyday is hard, and I choose what is worth the risk of feeling unwell, but that is a choice I never had before surgery. I’m going to continue to fill my life with as many experiences as I can to make up for all the time my Abdominal Vascular Compressions stole.

So to Professor Dr. Sandmann, Thank you. You saved my life in more ways than one.
To my mum, I wouldn’t be here without you. There wouldn’t have been surgery if it weren’t for your sheer determination to find help.

My health will never be perfect, but I’m no longer the girl I was, rapidly dying in a hospital bed at 15, and for that, I have a million reasons to be grateful.

This account will never be used again by me, but for anyone still looking for answers that follows this account, I hope this gives you hope to keep searching.

Love, Jemima