Nem Kearns:

I wanted to a highlight a couple of points around two very common, co-occurring conditions. Ehlers-Danlos syndrome, EDS, which I believe has been raised at this committee before, is a connective tissue disorder which has an extremely high crossover with autistic people. As it affects connective issue, it is literally a whole-system disorder, and can affect any system or multiple systems in the body. It is of particular concern, because once again, this is something for which we do not have public pathways to diagnosis in Ireland. It is classed as a rare condition; I think the figure is one in 200 people. Like the term "geriatric pregnancy" refers to someone who is over the age of 35, it is one of those medical terms which is misunderstood in a broader context. It is something we really need to invest in urgently. Other genetic conditions tend to have a higher prevalence in Ireland. We have no oversight of the prevalence of EDS.

I would not be surprised if, similarly to a high number of other genetic conditions, due to our small population size, we have a higher incidence of the syndrome than that. Another condition is fibromyalgia, a pain disorder which is an extremely common crossover. The European Parliament passed a resolution approximately 15 years ago, asking all member states to adopt an official recognition of fibromyalgia. Ireland has yet to do so. Urgent action is needed whereby conditions such as that are classed on the rare diseases list which, I think, has not been updated in more than 45 years. We need to look at them. Those two conditions in particular are highly gendered. Nine out of every ten people with fibromyalgia are women. All of these different intersecting issues further inequalities. If one's condition is not recognised, one cannot get support.

Another issue with recognition is that not all practitioners are equally recognised. We have members whose hearts are absolutely broken after having used all of their savings or borrowed money from family to access a private diagnosis, trying to access services and supports with their diagnosis and being told their diagnostician is not recognised. It is very difficult for people to find the information on who is and who is not recognised by various bodies and agencies of the State. It needs to be worked on, because we have widespread issues of there not being enough people and professionals. We need to invest in growing the expertise coming up, but we also have people who have expertise which is not recognised in transfer. That is very low-hanging fruit to take some pressure off the system and the community.