A questionnaire has been developed for patients who think they have Ehlers-Danlos syndrome (EDS), a connective tissue disease. Downloadable in PDF, it allows, once completed, to guide the doctor and guide the diagnosis.
In case of suspicion of Ehlers-Danlos syndrome (connective tissue disease), the patient may initially complete a questionnaire for orientation and access to diagnosis. This questionnaire, carried out by Emeritus Professor Claude Hamonet, a specialist in Ehlers-Danlos Syndromes (EDS), was sent to us. It is not a diagnostic tool, but rather a screening tool. It helps guide the doctor and can point to the possibility of Ehlers-Danlos syndrome. where to find it and download it in PDF? Who is he talking to ? What is it used for ? What are the questions asked ? How is the diagnosis then?
What is the Ehlers-Danlos syndrome (EDS) questionnaire for?
This is a questionnaire for orientation and access to the diagnosis to be completed by the patient, before a consultation with his doctor. It does not replace the diagnosis (so it is not a diagnostic tool, but rather a screening tool). It helps to guide the doctor and orient him towards the possibility of Ehlers-Danlos syndrome. In effect, “the diversity and multiplicity of the symptoms of Ehlers-Danlos very often make it difficult to communicate with the doctor, who is generally uninformed about this syndrome. The objective sought here is to select the manifestations most often encountered and, therefore, the most significant for guide him“, explains Professor Hamonet.
For who ?
The questionnaire for orientation and access to the diagnosis of SED is for people who think they have Ehlers-Danlos syndrome.
Examples of questions from the SED questionnaire
The expected answers are deliberately short (answers by Yes or no) because the questions are said to be “closed”. However, a comment seems relevant for certain questions.
► The questionnaire begins with General Information on the person (name, date of birth, height, weight, contact details…)
► Next, questions (yes or no) are asked about conditions that have potentially manifested during childhood : did you frequently have ear infections? angina? Nose bleeds? Did you have pain in the joints (shoulders, wrists, hands, knees, etc.)? Were you very flexible (putting one foot behind your head, sucking on your big toe, doing a face split)?
► He then proposes a part on health and family history : have you had one or more major accidental injuries (falls, sports accidents, public road accidents)? Are there other people in your family who have symptoms similar to yours?
► The questionnaire then makes it possible to an inventory of current symptoms. They are cut into 15 subcategories :
- Pains (Do you have pain in the ribs? Is your skin very sensitive?…)
- Fatigue (are you often tired?…)
- Sleep (do you often wake up in the night?…)
- Mobility and movement control (Do you have muscle twitches? Do you have tremors?…)
- Skin (Is it thin? Transparent?…)
- Bleeding (Do you bleed from the gums when brushing your teeth? Do you often have bruises?…)
- Aberrant reactions of the vegetative system (“dysautonomia”) (are you chilly?…)
- Digestive tract/abdomen (do you have trouble swallowing? do you have a bowel movement every day?…)
- mouth and teeth (Are your teeth breaking? Is your mouth dry?…)
- Bladder-Perineum (can you stay a day without having to urinate?…)
- Hearing-phonation-olfaction (are you bothered by noises?…)
- Vision (Are you nearsighted? Astigmatism? Are you bothered by light?…)
- Breathing, lungs, bronchi (do you have attacks of respiratory “blockage”?…)
- Genital life, sex life, pregnancies, deliveries (did you have miscarriages?…)
- Cognitive and learning functions, emotionality (Do you have memory problems?…)
► Finally, the questionnaire proposes a free space with the possibility of entering comments and clarifications that seem relevant to you.
Where to download the SED questionnaire in PDF?
The questionnaire can be downloaded in its entirety from the Professor Hamonet’s website. he is also available in PDF on the ISM Medical Center website in Boulogne-Billancourt, so that you can print it out and fill it in before the consultation with your doctor.
During your consultation, the doctor will analyze your answers and based on them, he can direct you to a practitioner who has acquired clinical expertise within a reference center or skills. the diagnostic of each type of SED is based on clinical criteria defined by the international consortium in the 2017 New York classification (official diagnostic criteria checklist available on The Ehlers-Danlos Society website, in English). The diagnosis is then formally confirmed by a genetic test, carried out within the framework of a genetic consultation specialized in EDS, except for the type hypermobile (yet the most frequent) for which there is no genetic test. Its diagnosis is therefore based on the grid of clinical criteria proposed by the international consortium.
Thank you to Professor Hamonet for sending us the SED questionnaire.
Sources: Prof. Hamonet’s website / EDS Society / Non-vascular Ehlers-Danlos Syndromes (SED NV) service page, Raymond-Poincaré Hospital