I am 2 years into my PhD journey and am delighted to say that we have had our first study published! I had no idea the complexities of a PhD when I set out and to achieve publication of an article is a huge milestone. You can read the review here, but let me also tell you a little bit about it in more easy language! (my family have already told me that it’s a massive well done but they wish they could understand it!) So, what’s the review all about. Let me explain…
I undertook a systematic review looking into the available non-surgical options of treatment for hEDS/HSD people with shoulder symptoms. When doing a systematic review, you basically cast a net on research that has been done in the whole world. We did this and from 1998 to 2023 and came up with a grand total of 4 studies. Yes, that’s right ONLY 4 studies. Yet again this highlights the lack of research and information available for hEDS/HSD people, particularly when it comes to treatment options. What is even more unbelievable is that the shoulder joint is one of the most reported joints to cause issues. The treatments that had been investigated were exercise routines, kinesiology tape and compression garments. All the treatment options showed promising results but here are the main key findings from the review:
Key take away messages for people with hEDS/HSD and shoulder symptoms and those professionals treating them include:
- The importance of carefully considering specific conservative interventions and their impact on various health aspects in individuals with hEDS/HSD.
- The need for developing a comprehensive treatment package for individuals with hEDS/HSD and shoulder symptoms.
- The systematic impact of connective tissue disorders on individuals with hEDS/HSD, leading to comorbidities and decreased ability to carry out daily activities.
- The effectiveness of strengthening exercises in improving function, reducing pain, and enhancing strength in people with hEDS/HSD.
- The necessity for supervision during exercises and the potential benefits of integrating low-load and high-load strengthening regimes, kinesiology tape, and compression orthoses in conservative management programs for people with hEDS/HSD.
So where next…a PhD is like writing a book. Chapters that fit together to form a story with direction and purpose. The systematic review is a chapter and has highlighted the gaps in research-based treatment options for hEDS/HSD people with shoulder symptoms. What it has shown is there has been some evidence towards the use of compression garments and that’s where the next chapter picks up. We are launching a survey into people’s experiences and perceptions of Dynamic Elastomeric Fabric Orthoses (DEFO) for shoulder symptoms in hEDS/HSD. From this study we will be able to shape the next chapter which will be testing out DEFO on people to see if they work, how they work and if they can be implemented into a treatment package for people with hEDS/HSD and shoulder issues. Here are some links if you would like to read more about my thesis (aka book!) and my journey to becoming a researcher.
Please see the below flyer for how to access the survey or click here. Your participation is greatly appreciated and will help shape the research and future management of hEDS/HSD with shoulder symptoms…research and management that is severely lacking.
And one last thing… I have set up a PPI group which stands for Patient and Public Involvement group. PPI groups are so important in helping to guide and shape research. They consist of patients, caregivers, and the public and have active involvement in various aspects of the research process. Unlike the participants in the research, PPI members contribute their perspectives, experiences, and insights to help shape research questions, study design, recruitment strategies and dissemination of findings. PPI involvement ensures that our research is relevant, ethically sound and most importantly aligns with the needs and priorities of the people it intends to benefit, thereby improving the quality and impact of the research. To date we have had one remote meeting via Teams. I presented my research to date, which included the findings of the systematic review, and we also had a very engaging and enlightening discussion on DEFO which then provided valuable insights from a patient perspective and enabled me to amend the questionnaire and edit /add to some of the question’s we will be asking. The PPI group have also acted as a pilot group for the survey, once more enabling valuable feedback. The group is hoping to meet twice a year. Dr Alison Allam from The University of Liverpool has helped with the group and has a great deal of research experience in PPI and the area of disbelief and disregard in medicine. She has been a tremendous asset to the team.
If our research has improved your knowledge, daily life, symptoms etc or if you are a professional, has it changed your practice, confidence or understanding of the conditions? If so, then we would love to hear from you so please do drop us a message. It helps to encourage us to keep on going and useful when asking for funding to continue to research in this area.
If you wish to seek further resources and support, then links to related charities are on our about page.
You can follow me on X/Twiiter @higo_anna and find my list of publications on my Coventry University page
You can follow hEDStogether on X/Twitter @hEDStogether and Instagram @hEDS_together
Reference to the systematic review publication
Higo, A., Palmer, S., Liaghat, B., Tallis, J., Silvester, L., & Pearce, G. (2024). The effectiveness of conservative interventions on pain, function, and quality of life in adults with hypermobile Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorders and shoulder symptoms: A systematic review. Archives of Rehabilitation Research and Clinical Translation, 100360. https://doi.org/10.1016/j.arrct.2024.100360
