Table 5. Experience prior to a diagnosis of EDS.
| Obtained diagnosis of EDS | n | (%) |
| 2020–present | 96 | 63.2 |
| 2010–2019 | 53 | 34.9 |
| 2000–2009 | 2 | 1.3 |
| Before 2000 | 1 | 0.7 |
| Noticed symptoms of EDS before official diagnosis | n | (%) |
| Less than 1 year | 4 | 2.6 |
| 1–2 years | 7 | 4.6 |
| 3–4 years | 14 | 9.2 |
| 5–9 years | 12 | 7.9 |
| 10–14 years | 19 | 12.5 |
| More than 15 years | 96 | 63.2 |
| Professional consulted before formal diagnosis | n | (%) |
| General practitioner | 144 | 94.7 |
| Physiotherapist | 131 | 86.2 |
| Rheumatologist | 101 | 66.4 |
| Other | 71 | 46.7 |
| Cardiologist | 60 | 39.5 |
| Immunologist | 29 | 19.1 |
| Were you misdiagnosed prior to your diagnosis of EDS? | N | (%) |
| Misdiagnosed | 129 | 84.9 |
| Correctly diagnosed | 23 | 15.1 |
| Number of misdiagnoses | n | (%) |
| 1–3 | 73 | 56.6 |
| 4–6 | 36 | 27.9 |
| 7–9 | 6 | 4.7 |
| More than 9 | 14 | 10.9 |
| Misdiagnosis * | n | (%) |
| Anxiety and/or depression | 91 | 73.4 |
| Chronic pain | 67 | 54.0 |
| Other physical | 58 | 46.8 |
| Generalised joint laxity | 52 | 41.9 |
| Other psychological | 47 | 37.9 |
| Chronic fatigue syndrome (CFS) | 45 | 36.3 |
| Dysautonomia | 18 | 14.5 |
| Fibromyalgia | 18 | 17.7 |
| Myalgic encephalomyelitis (ME) | 13 | 10.5 |
| Rheumatoid/Osteo/other arthritis | 6 | 5.9 |
| Marfan syndrome | 4 | 3.2 |
* Participants could select more than one misdiagnosis.