1. Birth year

2. Male/Female/Other

3. National health system that you’ve been in (with insurance/without insurance)

4. Do you currently have an active medical insurance?

5. Do you have a proof of disability? If yes, what degree?

6. Number of GP/specialist visits within the past year: how many GP, how many specialist

7. Medicine you take regularly, and for what symptoms

8. If diagnosed with EDS​

   • How old were you when diagnosed?

   • Did you attend a specific EDS clinic?

   • Did you get your diagnosis: via NHS / private?

   • After how many years of symptoms did you receive your diagnosis?

9. If not diagnosed, how long have you been having symptoms that impaired daily functioning? (in years: 0-1, between 1 and 5 years, between 5 and 10, more than 10)

10. Do you have any direct relatives with EDS, suspected or diagnosed? (yes/no, if yes then: a. suspected or diagnosed, b. what type of EDS)

11. What type of EDS do you have (or strongly suspect you might have):

• Hypermobility EDS (hEDS, also called type III) (Diagnosed/Undiagnosed)

• Vascular EDS (Diagnosed/Undiagnosed)

• Classical EDS (Diagnosed/Undiagnosed)

• Other type (Diagnosed/Undiagnosed)

12. EDS expresses itself in several areas. What is, for you, the area with the most severe issues for you? Choose three.

• GI (abdominal pain, diarrhea or constipation, frequent vomiting)

• General fatigue and low energy

• Muscles and bones (pain, frequent dislocations, subluxations, hip dysplasia, premature arthritis)

• Dental (teeth crammed in mouth space, tooth material too soft)

• Brain (migraines, Chiari malformation)

• Mental health (autism, depression, anxiety, panic attacks, OCD)

• Reproductive tract (problems related to menstrual cycle, sexual dysfunction, miscarriages, issues with pregnancy and birth, genital pain)

• Systemic allergies

13. Bowel area

• abdominal pain

• diarrhoea

• constipation

• alternating diarrhoea and constipation

• nausea

• abnormal bloating

• frequent vomiting

• chronic hiccups (not just occasional)

• chronic burping (at least 1x per hour, most waking hours, most days) 

• reflux

• hiatus hernia

• leaky gut syndrome 

• IBS (Irritable Bowel Syndrome)

• SIBO (small intestine bacterial overgrowth)

• food allergies and intolerances 

  • lactose   

  • gluten

  • histamine

  • oxalates

  • other (what)

• If you have food allergies, do the reactions occur: p.  

  • immediately after ingestion (5-30 min)?  

  • with a delay (up to 48h)?

  • sometimes immediately, sometimes later

• Additional comments?

​​

14. Muscles and bones area

• joint pain (occasional/often/all the time, barely registering/bearable/completely debilitating)

• congenital hip dysplasia

• premature arthritis

• frequent dislocations

• labral tear (at least one)

• osteoporosis

• marfanoid habitus

• unusual flexibility making the body prone to injury

• hyperextension at the knees (legs describing an arc when straightened)

• One leg longer than the other

• Additional comments?

​

15. Dental area

• absence of tongue frenulum (or much reduced)

• absence of lower lip frenulum (or much reduced)

• teeth crammed in mouth space

• growth of wisdom teeth causing pain due to crammed space

• abnormal teeth roots (‘S-shaped’), creating difficulties with extraction

• soft enamel and dental tissue, resulting in teeth sensitivity and pain

• gingivitis (inflammation of the gums)

• gum recession

• ‘ground’ teeth appearance (as if someone ‘shaved’ the tops off)

• Additional comments?

16. Brain-related area

• Migraines

• Tension-type headaches

• Chiari malformation

• Cranio cervical instability

• Tethered cord syndrome

• Spontaneous CSF (Cerebrospinal) leak

• chronic runny watery nose

• Brain fog

• Nausea

• Unable to regulate temperature

• Cognitive dysfunction (such as attention deficit, memory loss, slow processing of information)

• Misophonia (an unusual sensitivity to sounds)

• Synaesthesia (seeing letters in colour, tasting sounds, etc. – unusual sensory connections)

• Dyslexia or dyscalculia

• Hyperlexia or hypercalculia

• Reduced motor control (may be temporary, such as ‘in the morning’)

• Tingling in hands, arms, or feet

• Tinnitus

• Additional comments?

​

17. Genital and reproductive tract

• miscarriages or still births (one/two or more/not applicable)

• premature childbirth (one/two or more/not applicable)

• other issues in pregnancy (such as symphysis issues)

• premature infertility (ovaries stop working before 40)

• male infertility

• early menopause

• period pain or cramps (/not applicable)

• endometriosis (/not applicable)

• PCOS (polycystic ovary syndrome, multiple benign ovarian cysts (/not applicable)

• irregular menstruation (/not applicable)

• PMS (/not applicable)

• erectile dysfunction (/not applicable)

• vulvodynia (long-term pain in the vagina)

• sexual dysfunction of other sort

• Additional comments?

​

18. Heart and blood circulation:

• POTS (Postural Tachycardia Syndrome)

• racing heart even when lying down

• low blood pressure

• light-headedness

• fainting, including if related to anxiety-inducing situations

• fainting when standing still for longer than a few minutes

• dysrhythmia

• mitral valve prolapse (including if it was present in childhood and later disappeared)

• Additional comments?

​

19. Respiratory area

• Chronic runny nose

• Bronchoconstriction

• Wheezing

• Shortness of breath

• Sleep apnea

• “Air hunger” (as if you forgot to take a breath)

• Additional comments?

​

20. Skin

• Unexplained rashes

• Itching with or without rash

• Severe reaction to bug bites

• Skin prone to bruising easily (not remembering where the bruise came from)

• Soft velvety skin

• “Old lady hands” (excessively wrinkled hands at a young age)

• Impaired wound healing 

• Flushing of face/neck/upper chest

• Eczema

• Additional comments?

​

21. Mental health area

• ASD (Autism Spectrum Disorder) (diagnosed/undiagnosed)

• Chronic “reactive” depression, in reaction to life situation (such as following loss, traumatic life events, or accompanying hardship)

• Chronic depression for more than a year, without any of the causes above

• Social functioning impairment

• Panic attacks

• Anxiety

• OCD (Obsessive-compulsive disorder) (diagnosed/undiagnosed)

• ADHD (Attention Deficit and Hyperactivity Disorder) (diagnosed/undiagnosed)

• Bipolar conditions (diagnosed/undiagnosed)

• PTSD (Post-Traumatic Stress Disorder) (diagnosed/undiagnosed)

• Self-harm (If yes, at what age)

• Suicidal thoughts (If yes, how often/intense)

• Do you take any medicine to help with any of these conditions?

  • If yes, what medicines and for which conditions or symptoms?

  • Do the medicines help? (yes/no/somewhat; box for comments)

• Additional comments?

​

22. Systemic allergies

• MCAS (Mast Cell Activation Syndrome) (diagnosed/undiagnosed)

• Allergies to environmental triggers (such as mold, dust, pollen, animal hair)

• Chemical triggers (ingested, such as medicines (which?), an allergic reaction to alcohol, etc.)

• Histamine intolerance (diagnosed/undiagnosed)

• Asthma or respiratory issues triggered by allergic reaction

• Have you ever needed to carry an EPI Pen due to risk of anaphylaxis?

• Severe itching and wounds from chronic itching and scratching, including if in childhood and then outgrown

• Additional comments?

​

23. Other issues

• Reaction to anesthesia: typical/ atypical, if atypical then in what way

• Chronic fatigue

• Poor quality, not restful sleep (Tired when waking up)

• Low thyroid

• Dysautonomia

• Frequent nosebleeds (including if in childhood, then outgrown)

• Additional comments?

​

Thank you for completing this survey!