Self Treatment

Managing Ehlers-Danlos syndrome: a physician's perspective

November 28th. 2024, 2:18pm

This video is part of a series about a rare condition called Ehlers-Danlos syndrome, and how working as a multidisciplinary team can improve patient outcomes. The videos include interviews with a consumer, Tracey, and members of the multidisciplinary team that help to manage her condition. In this video, Dr Fraser Burling speaks about his experience working as a dual physician and rheumatologist in a multidisciplinary team to improve health outcomes for patients, including Tracey.

An international expert opinion was received on the treatment described in these videos. Download a copy of the opinion, written by Dr David Rabago from Penn State College of Medicine: https://www.hqsc.govt.nz/assets/Consumer-hub/Partners-in-Care/Publications-resources/Prolotherapy-review-letter-Dr-Rabago.pdf
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This series of videos describe the experience and treatment of one consumer with Ehlers-Danlos Syndrome (EDS). Three members of the multidisciplinary team (MDT) involved in the care and treatment of this person are interviewed.

We acknowledge that a MDT can be much larger than this and the video does refer to the wider MDT as an important aspect of diagnosis, treatment and care of people with EDS.

Owing to the diverse and complex presentation of EDS, Rare Disorders NZ (formerly NZORD) has produced guidance (funded by the Ministry of Health) that will help health care professionals and providers to assess, diagnose and plan care for people with EDS.

Such guidance will hopefully promote discussion amongst health providers treating EDS, resulting in improved care and outcomes for consumers.

ACC sourced expert opinion about the evidence-base of prolotherapy being provided by Dr Burling. This expert opinion stated, “Clearly there is support for this in the literature.”

https://www.hqsc.govt.nz/assets/Consumer-Engagement/Resources/Prolotherapy-review-letter-Dr-Rabago.pdf

At an ACC review hearing, the reviewer considered this treatment had been excluded from the ACC prolotherapy assessment and that it was “a generally accepted means of treatment within New Zealand.” As such, ACC paid the cost of prolotherapy for the consumer during the entire rehabilitation programme. The prolotherapy treatment described by Tracey has had positive results for her.

There is mention throughout the videos of the prevalence of EDS and indication that this is varied; prevalence will depend upon the definition being used and this will determine the inclusion criteria.
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