The EDS Lass writes about life with EDS, articles on relevant topics and her medical journey.
RECENT POSTS
Categories
Tags
Amélie art Croatia Diagnosis Diagnosis denied EDS Exploring Finland Food France health Healthcare System Issues hEDS Helsinki Holiday Home human-rights Hvar Ileostomy Infection informaion informed-consent Island law Lido life Lifestyle Mallorca Medical Mesenteric Ischemia NHS Failure Nostalgia Pairs Paris PoTS Recipe Rest rights Sea Sun Surgery Swimming travel Undiagnosed infection Visceroptosis
Many people with EDS endure years of symptoms before a diagnosis of EDS is made. I was almost one of the ‘lucky’ ones who had an early diagnosis. However, it was incorrectly denied by a consultant who was irritated by even the suggestion of EDS. It turns out she was wrong.
Symptoms of back pain and joint hypermobility impacted school life.
I had the chance of a timely diagnosis when my family and I were made aware of EDS, with the suggestion I have it, by an osteopath. For those who may be unaware, osteopaths are professional who work on the skeleton, muscles, ligaments and connective tissues.
We went to my GP, to relay the suggestion of EDS. The GP referred me to a rheumatology consultant.
However, the consultant I saw was visible annoyed by the mear mention of EDS. I remember the appointment, and her expression of frustration clearly. She told us that “osteopaths think they see EDS all the time”. It was clearly a sore point for her.
She did a very brief, lackluster assessment. I remember, even at 14 years old, thinking that she was bias. She conseeded that my ankles were hypermobile, but conluded there was nothing else.
My parents were told, unequivically, that I did not have EDS, and there was nothing wrong. She was passionate and insistant about this.
We were so close to getting a diagnosises, or even having the awareness that I may have EDS. However, despite my family being aware that doctors can are are sometimes wrong, her level of insistance had an effect; and EDS was forgotten. My symptoms continued.
When I finally received my late diagnosis of EDS in 2020, my family and I reaslised how close we were, and how wrong she was. From the experience, it seemed very clear that she had a problem with the concept of an osteopath identifiying EDS, and therefore we strongly suspect that she was unlikely to agree with them. Consultants are in a significant position of power.
Following my diangosis, I requested a copy of the medical records from the relvant department via a Subject Access Request (SAR). A SAR is legal request, under UK data law, which means you are entitled to a copy of your own data. I have written about getting a copy of your records via Subject Access Requests. I recevied records of the appointment and the post-appointment clinic letter.
The clinic letter ended with “I reassured the parents”. It was fairly shocking to look back at these records.
We did not even need her to diagnose me then, but her confidence that it was definitely not EDS was so misplaced and a signfiicant problem. I was young and it could have been proportional for a consultant, at least, to say that due to my young age it may be difficult to formally diagnose me then, but to potentially consdier it in the future if new presentations or symptoms start. She did such a good job insisting that we put it from my minds that we did not read more about EDS. If we had, my lung collapse at 20 years of age may have rung bells for us.
It turns out that the osteopath was on the money, completley. Their notes, which we already had copies of, noted numerous joints being hypermobile and hypermobile skin.
There were consequences of EDS being denied fervently and therefore lacking the diangosis for years. There have been numerous, significant practical, financial and stress-related impacts for my family and I, including years of misdiagnosis, years of seeking diagnoses, unneccessary medical tests and interventions, confussion and more. Much time and money were lost, that would not have been should EDS have actually been considered.
I remember the consultant saying that EDS was very rare. It seems she, like many consultants, know of the existance of certain conditions, but their training has left them so conditioned to only recognise, diagnose and treat conditions commonly seen, and more over to consider that rare conditions will never be seen by them. This is a considerable problem within healthcare.
A recent report (hEDS-START) from the University of Edinburgh found an average time to diagnosis of 20 years. The report states: “Key findings underscore the pressing need for action: Prolonged Time to Diagnosis: Individuals with hEDS/HSD in Scotland endure an average wait of 20 years from symptom presentation to diagnosis, significantly impacting their physical and mental well-being“.
The delay in diagnosis is unacceptable, and change is needed, as the report states.
The EDS Lass 