The Zebra Survey

We are looking for your feedback.

If you would like to help us improve this survey, please download the PDF, add your comments in the PDF and send your feedback attached to an e-mail to: 
steven.walker@forgottenpatients.org


 

Context questions

  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)

Content questions

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

We will take these areas one by one, to locate all or most of your symptoms.


Please tick those that apply to you according to your current knowledge.

Please put any additional info that you find relevant to the question in the comment boxes.

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!

We are looking for your feedback.

We are looking for people’s input on format, language, missing questions etc. as we validate the survey prior to ethical committee approval, dissemination, and anonymous response analysis.

 

People are welcome to respond to the questions at this preliminary stage, but these will not be included in our formal research.

Overlooked Diseases