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NZ Families Demand Overhaul of EDS/HSD Health Guidelines

  //health-fitness.news-articles.net/content/2026/ .. emand-overhaul-of-eds-hsd-health-guidelines.html
  Published in Health and Fitness on Monday, March 2nd 2026 at 2:49 GMT by The New Zealand Herald
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Wellington, New Zealand - March 2nd, 2026 - Families living with the daily challenges of rare genetic conditions, Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD), are urgently calling for a comprehensive overhaul of official health guidelines, deeming the current advice "incredibly damaging" and out of touch with the realities of living with these complex illnesses.

The Ministry of Health's current guidance, originally released in 2018 and updated in 2021, outlines the diagnostic and treatment pathways for EDS and HSD. However, advocacy groups and individuals impacted by these conditions argue that the advice significantly underestimates both the prevalence and the multifaceted nature of these disorders, resulting in debilitating delays in diagnosis, insufficient care, and a pervasive sense of invalidation.

EDS and HSD encompass a group of heritable connective tissue disorders. Connective tissue acts as the scaffolding of the body, providing support to skin, tendons, ligaments, joints, blood vessels, and organs. Deficiencies in connective tissue lead to a wide range of symptoms, including chronic pain, overwhelming fatigue, joint hypermobility (leading to instability and dislocations), skin fragility, and gastrointestinal issues. The impact on quality of life can be profound, often requiring significant lifestyle adjustments and ongoing management.

EDS New Zealand estimates that approximately 12,000 people in New Zealand are currently living with one of these conditions. However, experts believe this figure is a substantial underestimation, due to the diagnostic challenges and lack of awareness within the medical community. The complexity of EDS and HSD often means symptoms present differently in each individual, making accurate diagnosis difficult. Many individuals experience a 'diagnostic odyssey', enduring years of misdiagnosis and dismissed symptoms before finally receiving a correct assessment.

"The current advice creates a very narrow view of what appropriate care looks like," explains Bronwyn Cook, spokesperson for EDS New Zealand. "The guidelines suggest that a limited number of specialists are sufficient, but the reality is that patients need a multidisciplinary team approach. It's not simply about seeing a doctor; it requires input from physiotherapists specialized in hypermobility, occupational therapists to adapt daily living, psychologists to address the psychological impact of chronic pain and uncertainty, pain management specialists, and even geneticists for accurate diagnosis and counseling."

The lack of a holistic approach, as outlined in the current guidelines, leads to patients being underserved and their symptoms minimized. Many report feeling as though their pain is not taken seriously, being labelled as 'attention-seeking' or told their condition isn't severe enough to warrant comprehensive treatment. This dismissal can have devastating consequences for mental health and overall wellbeing.

The Ministry of Health acknowledges the concerns raised by patient advocacy groups. A spokesperson stated the ministry is "aware of the concerns and was considering feedback on the guidelines as part of a wider review of rare conditions." They affirmed their commitment to ensuring those affected receive adequate care and support, and indicated that the guidelines are under review to align with current best practices and address the concerns of patient organizations.

Reinforcing the concerns of New Zealand patients, Dr. Emma Woolley, a leading EDS and HSD specialist based in the UK, believes the New Zealand guidance is insufficient. "There's a crucial need to improve awareness and understanding of these conditions globally, and New Zealand is falling behind," Dr. Woolley stated. "The existing advice needs to be much more comprehensive and accurately reflect the lived experiences of patients."

The New Zealand Herald spoke to several individuals with EDS or HSD, who shared harrowing accounts of their journeys to diagnosis and the subsequent struggles to access appropriate care. One woman, requesting anonymity, recounted a 15-year struggle to receive a diagnosis, repeatedly being told her symptoms were "all in her head." Another man detailed the financial and emotional burden of traveling overseas to access specialized medical expertise unavailable within New Zealand.

EDS New Zealand is now demanding a formal, independent review of the existing health advice, alongside a substantial investment in specialist services throughout the country. They propose a collaborative approach, involving patients, medical professionals, and researchers, to create a guideline that accurately reflects the complexity of EDS and HSD and ensures all those affected receive the timely, appropriate, and compassionate care they deserve. The organization hopes that by shining a light on this critical issue, they can prevent further suffering and improve the lives of thousands of New Zealanders.