At this time, research statistics of the Ehlers-Danlos syndromes show the total prevalence as 1 in 2,500 to 1 in 5,000 people. However recent clinical experience suggests that Ehlers-Danlos syndrome may be much more common.
Unless you know someone with Ehlers-Danlos syndrome (EDS) or Hypermobility Spectrum Disorder (HSD) or have one of these conditions yourself you have probably never heard of them. Although the most common type of EDS, hypermobile type is not a rare condition, many medical professionals have very limited knowledge from their training, particularly about the multisystemic nature of the condition. Other professionals, perhaps in the education system or the local health services may never have come across EDS/HSD before at all.
So as patients and parents of patients we have come up against so pretty funny opinions from professional about EDS. I don’t think in most cases that these comments are supposed to hurt or do harm, sometimes people do not think before they speak. Sometimes people want to help, are trying desperately to help but due to lack of understanding they don’t quite get it right but sometimes they clearly don’t get it and should ask for advice from someone who does.
A little while ago I was having a challenging EDS mum day, I needed to know that I wasn’t alone in all of this so I asked some EDS friends and parents a question “What is the one thing that someone has said to you that has been so ridiculously stupid it has actually made you smile?”
I had an overwhelming response, some of the 95 things NOT to say to someone with EDS will make you laugh, others will leave you speechless or shaking your head in disbelief. What they will make you feel, I hope, is that you are not alone in this journey.
Please feel free to add your own in the comments. Can you relate?
1. Headteacher: “We need a date in writing from a consultant when your son will be well”.
2. Consultant : “We know she has hEDS but we don’t like to label them, is it because you want to claim benefits?”
3. “EDS is a positive thing as you can be a great dancer or gymnast”.
4. CAMHS therapist: “The Doctor upstairs says Chronic Fatigue isn’t part of hEDS”.
5. A Paediatric Consultant Gastroenerologist told me that of course EDS doesn’t affect the gastric system and I was stupid to suggest it did.
6. GP Appointment: examination of my daughter says “Well your very bendy “!
Grainne Sanchia Watts
7. My daughter’s GP (not her GP anymore needless to say!) when she was being denied a diagnosis and we wanted a second opinion, told her “only people who are pretty much contortionists get referred to Hypermobility clinics”.
8. Paediatric Consultant – “Don’t worry about it because you will grow out of it when your older”.
9. Last night at a college open evening, we explained the condition and ask about support, they told my son to practice walking across busy roads from now until September as they were sure it would help because (mom) is overprotective taking him to school by car.
10. Put in writing by pediatric rheumatologist. “Has EDS III but at least it’s not a serious one”.
11. Rheumatologist to my 15 year old “You don’t HAVE to click your joints the pain is just imaginary, if you go off and do something else you’ll soon forget about it!” Yeah right….. Lol
12. (Otherwise lovely) GP to me after reading report from rheumatology/genetics diagnosing daughter with hEDS: “No I didn’t mean this kind of thing; I meant did rheumatology think she had any REAL problems?”…
13. This one was said to me not my kids by a rheumatologist “EDS doesn’t cause pain and POTS is imaginary pushed through by an overly excitable Dr Gall!”
I honestly just sat there open mouthed!
14. “Don’t over medicalise her condition”, from Paed Consultant.
15. “POTS is just caused by inactivity & de-conditioning..nothing else”.
16. “You don’t look like you have EDS”.
17. Oh and the GP “You know EDS is rare don’t you?” As if being ‘rare’ means she couldn’t possibly have it! Haha. x
18. “It’s all in your head”.
19. Paediatric Consultant “Go home and eat curry to manage your constipation”, to my child with dysmotility.
20. “You need sectioning, it’s psychosomatic all in your head”. When my bladder, bowel and digestion failed they started to listen. X
21. A psychologist said…. “She doesn’t have EDS, she was seen dancing all around the ward by the nurses”.
22. Psychologist: “Stop looking for a medical solution to your problems.”
23. Unconvinced rheumatologist to my daughter’s observation that she had met someone else with Functional Neurological Disorder: “You should choose your friends more carefully”.
24. Social worker to student support: “Do you have a risk assessment for pushing R in her wheelchair in icy weather?”. One week later”, RISK ASSESSMENT FOR ICY WEATHER, “In icy weather everyone involved in looking after R should take extra care”.
The list is endless
25. Saw optician as daughter’s eyes (which are 90% made of collagen) had deteriorated and reminded her of EDS history only to be told “Oh is that like a virus or something that will be fine in a couple of weeks?”.
26. Paediatrician told me “Ignore her in pain, distract her and feed her fish fingers”. 2 years later she was diagnosed JHS 6/9, global weakness, had orthotics, physio and hydro to name a few.
27. I had a doctor tell me my shakes (which I now know is a benign tremor) was because “I had Irish ancestry and they had it hard during the famine!”
28. “You can’t be in pain as you can move more than most. Here’s some antidepressants”.
29. “You can’t have EDS your skin isn’t stretchy enough”.
30. “Just before we get started, I don’t actually believe that EDS type three exists. The others but not type three.”
31. Only had one comment from a GP which was “How did you manage to get an appt in alder hey, he isn’t sick” in reference to the paediatrician sending him to the rheumatologist there.
32. Rheumatologist to my 15 year old “You don’t HAVE to click your joints the pain is just imaginary, if you go off and do something else you’ll soon forget about it”! Yeah right….. Lol
33. Unconvinced Rheumatologist to my daughter’s observation that she had met someone else with Functional Neurological Disorder: “You should choose your friends more carefully.”
34. Oh another one to me rheumatologist: “I can’t see why the depo contraceptive injection is making you sublux more or give you more pain. ”
Baring in mind every time I was pregnant and through pubity I was suffering badly.
35. Orthopaedic to my daughter after a trampoline injury at school and the cold left her with mobility problems: 1) “You didn’t dislocate your hip, you would have had to be hit by a car!” 2) “Stop resisting me, I know you can lift your leg” and 3) “You can’t have hydrotherapy today – you will drown!”
this was ALL part of ONE CONVERSATION same day and he denied saying all of it at the CIN meeting !!!
36. I was told by a specialist hypermobility physiotherapist that “of course your hip isn’t dislocating – you wouldn’t be able to cope with the pain” 🙄
37. How about “I really don’t think your joints sublux as you would be in much more pain” 😫
38. Health visitor: “I don’t think there’s any problem with her I’m more inclined to think child abuse and/or poor parenting… oh and her university goals? I mean really I think dole queue or wiping bottoms is more apt don’t you?”
39. I had been explaining to a physio about my then 2 year old waking in the night screaming with leg pain, limping and getting swelling at her joints… She then said to me “do you think that maybe she is copying her big brother because he has joint problems?!” I replied well if she is, she needs an Oscar to perform like that, especially at 2am in the morning. x
40. From a cardiologist who wasn’t even my consultant the nurse just needed an ok for the tilt table.
The consultant walks in and says oh is this the lady with eds. Looks at me all strapped to the table………
WELL you haven’t got eds you’re not skinny and lanky!!!!!!!!!
41. “You are being bullied at school or controlled at home!!” – that was fun my normally gentle daughter told her where to go in no uncertain terms 😂
42. “He’s not hypermobile – he only scores a 4 on the Beighton score.” (He’s an 8 and professor Grahame laughed because the only non hypermobile joint he could find was his toes).
43. We got a score of 10 from our knowledgeable rheumatologist which I thought was pretty impressive.
44. “We are going to discharge you because there’s nothing more we can do for your 8 yr old son and you don’t want too many professionals involved do you!!!” Said his paediatrician. I mean honestly. The boy is 8. Just because he doesn’t know how to support him.
45. The OT left a PenAgain pencil and a writing slope for my son then in year 2 to help him as his fingers and wrists were super bendy. After a week we went in to find the teacher had taken both off him and was going to send them back. Her reason, “the slope takes up too much space and his handwriting hasn’t improved at all so it was a waste of time”.
46. Then there was my GP trying to refer me to a cardiologist for POTS as basic sit down stand ups in GPs office was very positive. The cardiologist said “they don’t accept referrals as POTS isn’t real.” So a rheumatologist decided to write in a report all cardiovascular events investigated and negative.
47. When I mentioned to my child’s rheumatologist about the new heading ‘hypermobility spectrum disorder’ which was met with a blank face and the rheumy said to my child “oh your mum even has a new name for what you have”.
48. “I’d like to discount your previous diagnosis of HEDS and POTS and start again from scratch, looking first into Chronic fatigue syndrome! Because I think those diagnoses are questionable.” Paediatrician talking about my 14 yr old daughter who was diagnosed by Prof Grahame and since has had it confirmed by a further 4 consultant specialists and numerous OTs, Physios, A&E staff etc!!! Didn’t make me smile though, it made me cry for 2 days!!!
49. Hospital registrar refusing an x-ray for a dislocated knee because if it was dislocated then her leg would be straight not bent as a person automatically straightens a joint when it dislocates. He then offered to pull it straight cos it was just cramp!!!!
50. “You have a healthy child…stop looking for answers”. ….while my child held a puke bowl, had vomited just before the appointment, had a rash, had all over pain, couldn’t eat, couldn’t sleep and was diagnosed with shingles the NEXT day (after a visit to an acupuncturist…me NOT stopping to look for answers!!)… paediatrician
51. “All children are hypermobile”.
52. I had a SENCO tell me that my son “couldn’t have an EHCP because they don’t cover health issues”……… umm I thought that was why it was called an Education and Health Care Plan????
53. “Don’t you think you daughter looks rather Downsy?” …. said when my daughter was 8 month old by a neonatal consultant at a check up !! I think my response was “err no… I think she looks rather daughtery but you sound rather nasty”.
54. Another time, while my daughter was writhing in pain with her stomach a doctor said “ there’s nothing wrong with you hop off the bed, you can go home” when we insisted she had a scan, turned out she had a cyst the size of a tangerine! That was one embarrassed quack!!…. He was sorry I suppose but at that stage we had met too many doctors who had been rude and condescending.
55. Don’t forget how he adjusted the seat higher before I jumped down 😂
Eleanor Lydwina Marsh
56. Orthopaedic surgeon to my 14 year old daughter 1 year before EDS diagnosis “You can’t dislocate without serious injury. Go out and ride a bike, that will sort you out”.
Rachel M Clark
57. A former head teacher in mainstream laughed when telling me my daughter was just naughty & wouldn’t conform. She also said she’d never get a Statement of Needs. My daughter was diagnosed ASD & Hypermobile, got her Statement & has gone on to attend an ASD school. x
58. My 6 year old daughters Peadtrician didn’t know her Rheumatologist and physio diagnosed hypermobility Eds, when I asked why he hadn’t considered it he said she doesn’t look like she has it ( I counted to 10) then handed him the diagnosis in writing. 😬
59. I saw a physio with my daughter and said I was concerned it was EDS rather than hypermobility she said “well do you watch coronation street? Izzy off there has EDS that’s EDS and clearly ur daughter hasn’t got that”.
60. When asking my child’s locum physiotherapist for advice managing chronic fatigue in my EDS, ME/CFS teen last Christmas. “Just be positive, Merry Christmas”.
61. “There is nothing wrong with you, you are a normal, healthy girl” ….”Then why do my knees dislocate so often?”……”It’s very common in young people”…. “Nobody else in my school has this happen!” 😂
62. I went to the doctor on the advise of my physio who was concerned about my hip thinking I may have a tear inside so I explained to the doc the pain locking hip etc and his response was “I don’t no anything about your condition so I’ll have a read up about it and give u a ring”. Never heard from him again. Oh and he printed me off a leaflet on hypemobility in children. I’m 37. lol
63. Today GP stated she doesn’t know why my daughter would possibly need a wheelchair, despite being the person to refer my daughter to wheelchair services in the first place.
64. “Sure EDS doesn’t cause tummy pain!”…psychiatrist.
65. GP to my 14 year old daughter after 4 years of disabling joint pain when we requested to see a different rheumatologist as we suspected hEDS (her big sister already diagnosed). “You’re a fit and healthy young lady, I don’t understand why you would want this label” this is the same GP who googled POTS in front of us and was appalled at my suggestion of adding extra salt to her diet…
66. The Senco in our first meeting said “there is nothing to worry about, my daughter was hypermobile and she stiffened up as she got older and is fine now”.
67. My twin daughters teacher who is also the school SENCO told me my girls should take risks, they both have complex needs, including physical disabilities but apparently I’m an overprotective parent when I guide them while they climb slides etc.
68. Told my daughter had growing pains and when I mentioned the falls was told, “it’s just uneven ground!!”
70. The reason I had my daughter ‘officially’ diagnosed was because I tried to ask a locum GP a question and got told I was an over protective mother who had too much time on her hands to Google things….
71. “She can’t have EDS, she would have had it since birth”.
76. That you can’t diagnose hypermobility in children as all children are hypermobile. :/
Kim Neige Guillot
77. A teacher commented when we brought his buggy to collect him in year 1 as we had a mile walk and the last bit uphill was always a struggle on his knees, commented “I know you’re think you’re trying to help him but keeping him in a pushchair is just stopping him from using his legs and building up strength”.
78. “Just wait until you get old.” That ticks me off the most. Your old and obviously functioning. I have had days in the bed incapacitated since I was 23. (now 47)
79. My sons first teacher accused me of having munchhousens by proxi.
As he looks normal.
Yeah I answered till he dislocates!
81. I had a doctor tell her “She can’t be that ill” as he’s never had anyone in so much pain they can’t be touched – turns out her list of ailments and complications were taller than his height lol….
82. This was said to me not my daughter, when an orthopaedic consultant was examining my joints. He got to looking at my hips, put my legs together with knees bent then proceeded to pull them both outwards til they were flat down on the examination bed on each side, he chuckled to himself, looked at me and then said, “gosh yes you are very flexible aren’t you – your husband’s very lucky isn’t he!” In a really pervy way, totally inappropriate and insulting and I couldn’t get out of there fast enough. 😡
83. My GP best suggestion for muscle cramps and joint pain was to rub coconut oil on myself….
84. One of our previous GPs refused to refer for connective tissue disorders and was harping on about getting a formal diagnoses for autism, which we didn’t want at that time.
Old GP: if we can diagnose him with autism he will get lots of support from the LA for home education.
Me: I am a trustee of the largest home education charity in the country, I know what I am saying when I say there is no support for home education from the LA. I want Marfans eliminated as it is a life limiting condition.
Old GP: Oh yeah…he does show signs of that… I will refer you then.
He initially referred us to haematology!
85. A physio said “I refused treatment” and refused to treat me again as I said I’m allergic to chlorine (badly) and I couldn’t use the hydro pool. It’s all over my medical notes I’m allergic and set of asthma and burns skin.
86. The pain you are experiencing is like when a soldier looses his leg but can still feel pain in it- from paediatric consultant.
87. From pain management clinic: “We don’t up doses in EDS patients”. Because apparently WE don’t get acclimated like EVERYONE else who has ever taken pain meds consistently. OR because my pain can’t possibly be getting WORSE as I age and EVERY joint in my body is becoming riddled with osteoarthritis.
88. Rheumatologist “you don’t have full blown Eds as you don’t have the vascular type!”
89. Seeing a GP about ongoing pain and falls for my daughter and the first thing doc says is “what exactly r u expecting from this appointment u must want something cause u keep coming back”. Umm let me think.
90. Doctor: “You don’t have to worry unless it’s Marfans…”
Libby Listens Bassnett
91. GP: “I think that the BP monitor may be faulty – no one has results like that”.
92. At 14 I was diagnosed with Narcolepsy and very depressed. Doc – “what do you like doing”? Me – “horse riding”, Doc- “excellent,”. Looks at my mum, “she needs a horse” Mum ” yes of course, and I’m guessing the NHS will supply one”???? 😂
93. My daughter has hearing loss from EDS and in 5th grade a substitute told her to take the chewing gum out of her ears… they were the pink molds for her hearing aids. Lol
The kids actually laughed at the teacher…
94. My dd pead keeps telling me to buy a trampoline for her constipation. I am sure it would help but I am not buying one!
95. “Vascular EDS isn’t that serious”! ….pain specialist