Connective Tissue

The interplay between hEDS, MCAS, POTS and fibromyalgia

Primary Supervisor: Dr Boris Budiono
Location: All campuses
Keywords: ehlers-danlos syndrome, inflammation, mast cell activation, syndrome, POTS, fibromyalgia
Research Group: Food as Medicine (FAM) Research Group

Mast Cell Activation Syndrome (MCAS) is a condition where mast cells inappropriately and excessively release chemical mediators, namely histamine, that result in inflammatory responses and symptoms such as hives or flushing, to anaphylaxis. This project aims to determine the linkages between three distinct syndromes (MCAS, Postural Orthostatic Tachycardia (POTS), and fibromyalgia) that are commonly found in certain individuals with connective tissue disorder, hypermobile Ehlers Danlos Syndrome (hEDS). We will investigate the literature to find current evidence of linkage, and to determine future directions in research in an evidence-based manner.

Interested? Start the conversation here by contacting Dr Boris Budiono

A qualitative study to explore the lived experience of people with hEDS and HSD on tertiary education and the impacts on career advancement.

Primary Supervisor: Dr Boris Budiono
Location: All campuses/Online
Keywords: ehlers-danlos syndrome, qualitative resesarch, disability research, focus groups, tertiary education

People with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) experience barriers to full participation in society due to the significant emotional and physical sequalae of their condition. To date, no studies have examined people with hEDS/HSD’s participation in university education. However, investigations into the lived experience of hEDS/HSD and the academic adjustments needed by people with disability in a university education setting suggest that the university education environment may present unique challenges for people with hEDS/HSD such as lack of professional understanding, social stigma, and the experience of physical and mental restrictions.

This qualitative research project will investigate the perspectives and experiences when accessing and engaging in university education experienced by people with hEDS/HSD. Focus groups will be used to obtain rich data about interactions between the individual, social, physical, and organisational factors that influence the person with hEDS/HSD experience of university education. Reflexive thematic analysis of focus group data will seek to identify the dominant perspectives and experiences of people with hEDS/HDS as the move through the university education system from enrolment to graduation.

Interested? Start the conversation here by contacting Dr Boris Budiono

A Systematic Review of Exercise/Diet in managing symptoms in people with hEDS

Primary Supervisor: Dr Boris Budiono
Location: All campuses/Online
Keywords: systematic review, ehlers-danlos syndrome, exercise, diet

Genetic connective tissue disorders such as hypermobile Ehlers Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) are historically difficult to treat due to the lack of understanding in the medical community. This means that it lacks objective diagnostic criteria, and clear treatment or management options. Besides physical exercise, one aspect that is purportedly beneficial to patients is nutrition and dietary supplementation. For example, many patients anecdotally report a gluten-free, FODMAP or avoidance of certain food groups reduce debilitating symptoms. Our research group’s work has shown that 59% patients self-reported food allergies/sensitivities in a 2021 national survey. Furthermore, some report the use of specific supplements that may be of benefit. This project aims to review the current scientific literature in the area, as it is possible that much of the information is anecdotal in nature.

Interested? Start the conversation here by contacting Dr Boris Budiono