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Ehlers-Danlos Syndromes New Zealand

Ehlers-Danlos Syndromes (and hypermobility spectrum disorders) are 13+ types of a rare connective tissue disorder. Hypermobile type, our most prevalent type, is currently noted as 1:3100 1, but is thought to be more prevalent as described; the lack of awareness and education in the medical population is what is halting further identification of these conditions.

EDS has clear clinical diagnostic pathways for diagnosis, and in New Zealand we are slowly building our expert base, but we continue to be met with medical professionals who ‘don’t believe’ these disorders.

In the last 12 months we have had multiple untimely deaths in our Ehlers-Danlos Community in New Zealand. 
3 of these passings were in a previous series of articles with NZ Herald in 2018.

These deaths, and many more in many other communities alike, could have either been prevented with appropriate and timely medical care with supportive management, and ultimately allowed consumers to have better lives and the lives that they deserve to have.

The issue becomes when we have medical professionals unwilling to learn and research, and also lack of awareness and education for medical disorders, leading medical professionals to label consumers with mental disorder such as those listed in the DSM under Somatic Disorders 2, including Factitious Disorder (formerly Munchausens).

This leads to multiple issues for a consumer, and their human, disabled, and consumer rights are breached, when they do not receive adequate care and management, inevitably ending with poorer health outcomes and death.

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The somatic disorder pathways (DSM) are regrettably viewed by some as a convenient escape route for grappling with intricate medical conditions. Rather than delving into thorough investigations and seeking expert opinions, certain medical professionals may opt to label a condition as somatic, using it as a scapegoat. This tendency may stem from a fear of acknowledging their own limitations or a perceived sense of superiority—a sort of god complex within the medical community.

This behavior can manifest as a hesitancy to consult with knowledgeable colleagues or specialists. The fear of appearing inadequate or lacking expertise can deter medical professionals from reaching out for assistance or seeking a second opinion. This aversion to collaboration and consultation can impede accurate diagnoses and appropriate treatment plans for patients, potentially leading to prolonged suffering and dissatisfaction within the healthcare system.

This all comes at the consumers cost, physically, mentally and financially, and impedes their consumer and human rights.

Regardless of any diagnosis, including mental disorders, consumers deserve to have medical care and management. Consumers deserve to have support to live their best lives and to have the best possible outcomes for their situations.

We have the right to receive timely care and management. We have the right to receive care in our own turangawaewae. We have the right to choose who cares for us. We have the right to an unbiased second opinion.

Our medical systems need to start working with one another instead of being too proud to admit when they need help, and trusting in medical professionals who have done extensive research and study in a certain area of work.

Our medical system needs to have a better complaints system where these complaints can be heard in a timely manner, unbiasly, including approaching experts for thought opinion. These long wait times for complaints to be processed come at a consumer's health and welfare.

We are asking for medical professionals to do their jobs and thoroughly investigate or refer on when common issues have been ruled out.

There is no currently agreed upon culture in Aotearoa New Zealand, but one thing I can guarantee is that every single person living in NZ wants to have a person centered holistic approach to their health care.

Currently the disparity between the idealised vision of patient-centric healthcare and the reality experienced within modern healthcare systems is of a significant concern. The romanticised ideal envisions a healthcare system that prioritizes patient well-being, with attentive, knowledgeable and comprehensive care and investigation at its core.

We will be reaching out internationally to gain letters of support for changes to the DSM with APA to better help identify individuals medical needs.

We have also set up a petition for anyone to sign, world wide.

New Zealand may be a small country, but we could be world leading in healthcare if we let ourselves, but unfortunately that responsibility falls on our government and the funding provided.

These deaths ultimately lie at the hands of those who denied them recognition, timely care and management.

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