A group discussion was held during the Global Learning Conference in Dublin on August 3rd, 2023, to address the unmet needs of people with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) in Ireland. The discussion was opened with an overview by Anne Micks, the leader of Irish EDS, supported by Assoc. Prof. Alan Hakim, CMO, Research Director & Education Director at The Ehlers-Danlos Society, Lara Bloom, President & CEO at The Ehlers-Danlos Society, and Medical Genetic Specialist, Dr. Anand Saggar, and attended by community members in-person and virtually.
Anne began by highlighting the importance of raising awareness about EDS and HSD among Irish patients, as the population affected by these conditions is steadily growing. While some improvements have been made in recent years, the progress has not been sufficient to meet the needs of the community.
One positive development mentioned was the monthly clinic organized by Dr. Saggar, which has significantly improved the lives of individuals with EDS and HSD Currently, it is estimated that there are over 2,000 diagnosed EDS patients and 650 diagnosed HSD patients in Ireland. Previously, patients had to travel to England for a proper diagnosis and treatment before Dr. Saggar’s clinic was established. However, recent prevalence studies suggest at least 6,250 people have a type of EDS or HSD in Ireland and there is increased need for pathways to diagnosis and care.
It was emphasized that each person’s journey with EDS and HSD is unique, and individuals must take responsibility in seeking answers and support. One of the challenges mentioned was the lack of validation and alternative treatment options from medical professionals, which can be demoralizing and traumatic for patients and their families.
The discussion focused on potential solutions to address these issues. One suggestion was to identify individuals who are passionate about making a difference and involve them in the process of change. Establishing a multidisciplinary team that can coordinate care was seen as crucial for providing comprehensive support. The Kent model, where patients and healthcare professionals engage in cross-dialogue, was highlighted as a potential approach to bringing about change and improving understanding.
It was acknowledged that addressing the unmet needs of individuals with EDS and HSD is not unique to Ireland but is a global issue. Efforts are being made by The Ehlers-Danlos Society to educate and re-educate healthcare professionals through EDS ECHO and educational events, with the 2017 criteria currently being revised. The launch of the Centers and Networks of Excellence) program aims to reach out to local healthcare professionals and experts in Ireland and beyond to enhance their knowledge and expertise.
The importance of networking, camaraderie, and building a directory of local specialists was emphasized. It was noted that allied health professionals, such as physiotherapists, play a significant role in providing support to patients and should be included in the care team.
Another need highlighted during the discussion was the requirement for a centralized hub of knowledge on EDS and HSD. Currently, information sharing between hospitals is limited, causing patients to start their journey anew with each new healthcare provider. Official backing from The Ehlers-Danlos Society, healthcare professionals, and various stakeholders was deemed essential to address this issue and ensure that doctors are properly educated about these conditions.
The discussion also touched upon the financial implications of inadequate services for patients and the potential long-term benefits for the government by acknowledging and addressing these needs. Collaborative efforts between individuals, The Ehlers-Danlos Society, and relevant stakeholders were seen as crucial to drive positive change.
In conclusion, The Ehlers-Danlos Society will continue working with Anne Micks and other key stakeholders to improve support for individuals with EDS and HSD in Ireland. Efforts are being made to raise awareness, educate healthcare professionals, establish coordinated care systems, and advocate for the acknowledgement of these conditions at the governmental level. By addressing these unmet needs, steps are being taken to better support the EDS and HSD community in Ireland.
