07/03/2025
The Reality of Ehlers Danlos Syndrome (EDS) and Vascular Compressions (AVCs) in NZ:
Today's NZ Herald article by Isaac Davison about Professor Wilhelm Sandmann presents an incomplete picture that fails to acknowledge the complex reality patients with EDS and vascular compression syndromes face in New Zealand.
The NZ Herald's sensationalist headline "German surgeon with EDS cases from NZ charged with negligently killing one patient, harming another" exemplifies irresponsible journalism and clickbait tactics. It selectively highlights old charges that haven't proceeded to trial after two years while creating panic among vulnerable patients who have no treatment options in New Zealand.
The headline deliberately implies that patients' only lifeline is dangerous without acknowledging our healthcare system openly admits it cannot provide care for these conditions. It exploits medical fears while ignoring hundreds of successful patient outcomes from surgery and the documented letters from NZ healthcare providers explicitly stating they have "neither the expertise nor resources" to help these patients. Rather than providing balanced coverage of the complex risks/benefits patients must weigh when seeking treatment overseas, this fear-mongering headline serves only to further stigmatize already vulnerable patients without offering solutions.
My daughter Jemima had surgery with Professor Sandmann almost 2 years ago and it has both saved her life and restored her quality of life immensely. We sought surgery as a last resort after trying all the conservative measures available in NZ before being told by multiple doctors that her only chance at survival was seeking surgery at a high volume treatment center specialising in EDS and AVCs of which NZ has none.
Read that again: I was told by multiple specialists in NZ including prominent NZ vascular surgeons who would only speak “off the record” along with overseas specialists in these rare conditions working in high volume treatment centers that she was so severely affected that
“Her only chance at survival was decompression surgery”
Before surgery she was suffering immense pain and malnutrition, fed only by tubes, and had lost feeling in her legs using a wheelchair to walk. Since the surgery, her quality of life continues to improve and she has returned to health, eating and drinking what she wishes, and even dancing. She still has EDS - no surgery can cure EDS or symptoms or comorbidities common in EDS, these all require ongoing medical care and treatment from a multi disciplinary team.
EDS affects every individual differently and impacts the entire body with complications ranging from mild to life-threatening. According to the 2017 International Classification of EDS published in the American Journal of Medical Genetics, gastrointestinal dysfunction is present in over 50% of EDS patients, with symptoms including dysmotility, gastroparesis, and chronic abdominal pain (Malfait et al., 2017). The Journal of Clinical Medicine has documented that vascular compressions are significantly more common in EDS patients due to the tissue laxity that allows organs and vessels to shift position (Chiarelli et al., 2020).
There is also the fact that in EDS patients - even those who have had decompression surgery - further compressions may develop. The surgery does not cure the EDS that causes the lax connective tissue that droops and creates vascular compressions.
The reason we chose Sandmann for his surgical approach is because he acknowledges the importance of recognizing EDS in his surgeries and surgical approach. This approach is increasingly supported by medical research, with a 2023 article in the Journal of Vascular Surgery documenting the importance of EDS-specific surgical considerations when treating vascular compressions (Chopra et al., 2023).
Medically this is a big high risk surgery on very nutritionally deplete patients - it has to be understood in that context. In Professor Sandmanns published literature on his surgical techniques he lists 1 and possibly 2 peri-op deaths in a series of over 360 patients. This gives an Op Mortality of less than 1 %.
Most major Operative Procedures have similar risk.
No surgery is without risk and the center where the Professor operates is a highly respected clinic known internationally for its progressive and innovative medical care in many different disciplines from cancer care to spinal surgery and neurosurgery and of course Sandmann’s compression surgery. Prior to the surgery we had multiple meetings with Professor Sandmann and other specialists from his multidisciplinary team to discuss the surgery process and risks in detail including the risk of death from surgery, anaesthesia, infection and other complications associated with the surgery. We were under no illusion that the surgery would cure the underlying condition of EDS.
While we were there we also met patients from all over the world who had travelled to seek medical care not available to them at home at the clinic. Somehow we accept when patients travel for cancer treatment or drugs not available in NZ because we know NZ to be too small and under resourced for rare conditions population wise. But as a health system and a country we don’t acknowledge that patients with multiple AVCs threatening their lives need to travel to a specialist centre overseas. Because population wise in NZ it is statistically impossible that any drs in nz would have the patient volume to become highly specialised in preforming avcs surgery for multiple compressions at once in patients with EDS.
It is also important to note when reading the herald article that there are many compression surgery treatment centers around the world that patients can choose to self fund if they have the means but here in NZ there is no surgical option for multiple abdominal vascular compressions as seen predominantly in EDS patients which puts lives at significant risk and seriously impairs patient quality of life while prolonging suffering.
The Herald's portrayal of patients being "lured" by social media into seeking treatment overseas is not just deeply offensive it’s patronising. The reality of the situation is that parents and patients seeking treatment for EDS and vascular compressions are frequently highly qualified professionals across diverse fields including medicine, law, science, education, and business. Many hold advanced degrees and bring extensive experience in research methodology, data analysis, statistical evaluation, and professional risk assessment to their healthcare decisions. Their medical decisions represent carefully calculated risk/benefit analyses based on systematic evaluation of all available options, often after years of meticulous documentation and consultation with multiple specialists both in New Zealand and internationally. It is a dangerous mischaracterization to dismiss years of careful research and desperate searching for answers by suggesting it is a social media trend. It is absolutely unconscionable to suggest that families who have watched their loved ones deteriorate for years, who have meticulously researched medical literature, consulted multiple specialists, and exhausted every possible avenue within NZ are somehow being manipulated or making uninformed choices. This framing shows a profound disrespect for patients' intelligence and agency, and attempts to invalidate the legitimate medical decisions made by families facing life-threatening conditions with no options at home so are choosing for themselves a lifesaving surgery overseas with full knowledge that it has both documented sucess rates and risks.
The Herald's focus on crowdfunding misses the core issue entirely. Patients would not have to resort to GoFundMe campaigns and public fundraising if they could access treatment options here in NZ, or at the very least be funded overseas by the High Cost Treatment Pool (HCTP) as was the case for AVCs patients prior to December 2023. Health NZ suddenly reclassified these surgeries as "experimental" despite years of successful outcomes, meaning that those without means to self-fund must give up all privacy and literally beg for surgery to give them quality of life or continue living in agony and malnourished. This forces vulnerable patients to choose between public humiliation or continued suffering - a cruel position no patient should ever be placed in. We are so glad that GiveALittle pushed back on this as without GiveALittle helping kiwi families raise money to pay for medical expenses not covered by the healthcare system many people would miss out on necessary treatment. Again, as above this framing also shows a profound disrespect for the intelligence and agency of those members of the public who make the choice to donate their hard earned money to crowdfunding causes such as compression surgery, and the framing by the herald also attempts to invalidate the legitimate medical decisions made by families facing life-threatening conditions when they have been given no surgical treatment options at all in NZ.
The medical literature firmly establishes these conditions as medical fact. Dr. Sandmann's research in the American Journal of Medical Genetics https://pubmed.ncbi.nlm.nih.gov/34747562/ is just one of many peer-reviewed publications confirming the relationship between EDS and vascular compressions. The highly respected Mayo Clinic has published extensively on the validity of median arcuate ligament syndrome and other compression syndromes (Khrucharoen et al., 2020). The Cleveland Clinic's vascular surgery department documents superior mesenteric artery syndrome as a recognized condition requiring intervention when conservative measures fail (Weber et al., 2022). These aren't fringe theories - they are documented medical conditions in prestigious medical journals and taught at the world's leading medical institutions.
While the Herald article mentions Dr. Sandmann's charges, it selectively omits several critical facts in Der Spiegels article:
1. The charges against Dr. Sandmann have not progressed to trial after two years because the court has yet to determine if sufficient evidence exists to proceed. As Der Spiegel notes, "the court has not yet decided whether to admit the charges or open the main hearing."
2. The Herald fails to mention that medical opinion is divided regarding these techniques. While some German vascular surgeons express concerns, others defend the methods: "The way he exposes blood vessels is unique... The success rate is high. The patients are not cured afterward, but many feel better." And that Sandmann was hired post charges by Dr. Andreas Schmitz at the Clinic Bel Etage for his extensive expertise in this rare field and who defends his methods: "I wanted to talk to him first before I made a judgment," says Schmitz. Then he hired Sandmann.”
"The way he exposes blood vessels is unique... The success rate is high. The patients are not cured afterward, but many feel better."
“Sandmann operates on compression syndromes. The patients - mostly female and around 30 - suffer from weak connective tissue. This can lead to organs sagging, such as the kidney. This leads to a bottleneck in the body, the artery squeezes the vein, compressing it. The blood then no longer flows through the body as it should.
You can imagine it like a traffic jam on the motorway, says Andreas Schmitz. When the A46 in Düsseldorf is closed, cars look for other routes via surrounding roads. The same thing happens to blood. It initially backs up and then flows in other directions, for example from the kidneys to the ge****ls. The patients then suffer from inexplicable stomach pain, loss of appetite, nausea, vomiting, and weight loss. It is not uncommon for them to be mistakenly operated on in their gastrointestinal tract or to be placed in psychiatric treatment because doctors suspect they have an eating disorder.”
This is the most important piece of information
1. decompression surgery is prefomed to restore blood flow to where it should go once again. In my daughter’s case she was able to eat, drink and walk again which the compressions had made impossible.
2. Decompression Surgery does not cure EDS. Patients with EDS have a chronic lifelong condition that presents with varying severity in every patient. Serious symptoms may remain but the blood flow getting to where it needs to can only improve health in the same way that blood flowing restriction will cause immense complications for the body.
3. Most crucially, the Herald article completely ignores what the NZ medical system's own documentation proves - that these patients are systematically denied care in New Zealand with statements like:
- "Unfortunately, we are not able to offer assistance and management of these multiple complex problems. We have neither the expertise nor the resources that are required to provide quality care to this patient."
- "Due to resource constraints in our Department... We do not have the capacity to see most patients with non-inflammatory musculoskeletal conditions including hEDS."
All my daughter and I want is for a pathway here for patients to achieve diagnosis and treatment options to improve their quality of life such as surgical options and multidisciplinary care rather than gaslighting, misdiagnosis, and scaremongering. Restoring blood flow to vital organs will improve health. Leaving patients with blood restricted to vital organs for extended periods can cause lifelong irreversible damage even if later restored. Support and pathways for patient’s suffering from EDS symptoms and comorbidities to be available here in NZ are what is needed.
Despite these challenges, we have received incredible support from many individual healthcare providers within the NZ health system and private NZ doctors and allied healthcare professionals also. We are eager to work alongside them all public or private to develop better outcomes for patients. In fact, Health NZ's CMO Helen Stokes-Lombard personally emailed me on December 10, 2024, inviting us to participate: "As we move forward, I believe it could be valuable to organise an online engagement session with you and others to share their experiences and concerns with Health NZ while we progress work to formally incorporate patient voice into our processes. This would allow us to hear directly from patients directly in the interim and gain further insights into their health challenges." I responded immediately asking for a date for this and look forward to hearing more from her.
This is the collaborative approach we need - not sensationalized articles that further stigmatize already vulnerable patients and families. I will be laying a complaint to nzherald.co.nz regarding their sensationalism and irresponsible journalism. 🦓 please support me by sending your own: formalcomplaints@nzherald.co.nz
- Rachel
Photos showing quality of life for my daughter both pre and post decompression surgery with Professor Sandmann 🧡 🧡🧡🧡
