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Ehlers-Danlos Syndrome Patients Seek Respect, Understanding


People who suffer with Ehlers-Danlos syndrome, an inherited connective tissue disease, have reported not being respected when seeking medical care. The lack of respect can have an emotional impact on these individuals that can last for many years and affect their ability to seek health care.

Ehlers-Danlos syndrome is a condition in which there is a defect in the tissues that provide support to the body’s muscles, skin, and ligaments. This results in unstable joints, which are the result of faulty collagen, a protein that provides strength and elasticity to connective tissue.

As a result, people who have Ehlers-Danlos syndrome, which affects approximately one in every 5,000 people, according to the Ehlers-Danlos National Foundation, experience a range of unusual and painful signs and symptoms. These can include loose/unstable joints which are prone to frequent dislocations, joint pain, fragile skin that bruises or tears easily, severe scarring, slow and poor wound healing, development of fleshy lesions (molluscoid pseudo tumors), chronic debilitating musculoskeletal pain, poor muscle tone, and gum disease.

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There a six major types of Ehlers-Danlos syndrome, which are classified according to the signs and symptoms. They include hypermobility, classical, kyphoscoliosis, arthrochalasia, dermatosparaxis, and vascular. The vascular type is considered to be the most serious, because there is the possibility of organ and blood vessel rupture. The syndrome affects both males and females of all ethnic and racial backgrounds.

The current study, which was published in the January 2010 issue of Disability and Rehabilitation, consisted of a questionnaire directed at individuals who suffer from Ehlers-Danlos syndrome. The men and women described their encounters with people in health care as “being ignored and belittled by health-care professionals,” to “being assigned psychological and/or psychiatric explanations,” and “being treated and considered merely as an object.”

As a result of these experiences, the individuals noted that they were “mistrusting the physician” and “risking bad health.” The researchers note that health-care professionals should protect human dignity and treat each patient as a unique human being who has the ability to master his or her own life. To learn more about Ehlers-Danlos syndrome, you can visit the Ehlers-Danlos National Foundation website.

Berglund B et al. Disability and Rehabilitation 2010 Jan; 32(1): 1-7
Ehlers-Danlos National Foundation



i was quite sad to read this, my son has eds and he's had excellent care from all medical staff at the surgery in williton where i live and musgrove park hospital where he is at the moment. I think he must be 1 of the lucky ones x
I am glad to hear your son is receiving excellent care. One possible benefit of publishing stories like this one is that more people will become aware of the situation and take steps to improve them. Best wishes to your son.
Ive had them tell me I am a heroin addict, I am a drug seeker that there is no such thing... I have had them ttransfer me to different hospitals because they dont want to deal with a dislocated shoulder. Ive been told it doesnt exist and it is really munchausins( spelling is wrong i know) I have had doc's walk in and grab my arms, including the one with a fused shoulder and tell me" it is only about comfort level, you are not out of place" and try to raise both arms, one with the fusion and one that is dislocated over my head. I have had them treat me as an "medical specimen" and basically attempt to make me preform on command. EDS is REAL and it freaking SUCKS
i can relate to that, they told me that there was nothing more they could do for me, and waited until i told my family the same, i was extremely sick at the time and was told i would be returning home for palliative care only, on the day i left the hospital, they told me they were diagnosing me with Munchhausens syndrome. ive been nothing but honest with doctors, sometimes a little too honest, believing that every little thing could lead to a treatment to make me better, to be told its in my head and im making myself sick, i think anyone that can do the things that ive been through to themselves, and lose all independance and your life because of it, are sick, and do need psyche help. i was sent by my "consultant" to london to see a professor and within 15 minutes he had diagnosed me with E.D.S and my first question was " is it caused by psyche problems?" id been told that it was in my head that many times i started to believe it was true myself. but i can say with absolute certainty, its not in my head, the pain and suffering, along with the fatigue and tiredness and the constant disruptions and inconveniences in my life are completely real, if i could go back to a "normal" life, believe me i would, just as im sure anyone with any illness let alone the complications of E.D.S would. the consultant recently told family that he believed that the prof gave misleading questions, where i would know to answer yes or no, and that the prof just jumped on e.d.s as it was a specialty of his, and that he wasnt objective. quite frankly, i think its normal doctors that arent objective and if they cant understand symptoms or illnesses they are quick to blame psyche problems. they need to be better trained to look for alternative problems, and not rely so much on something that a patient has no chance of fighting - how can you fight a case of "its in your head" 's i mean its like fighting a ghost. everything they say you cant argue other than to say, i know its real. i think this is why doctors diagnose psyche problems when all else fails as the patient cant fight or prove otherwise - well not conclusively. if a doctor is going to come to that conclusion, there isnt anything the patient can do to change their minds - come on - i mean this is the day of technology! where anything is possible. i cant wait for them to design a machine that makes the doctor feel what your feeling just for a few seconds... im sure E.D.S would have them drop to their knees and beg for ever doubting you for the few seconds glimpse they would have at an E.D.S sufferers life. :) chin up all E.D.S sufferers out there. you are not alone :) x
i am 21 and my mom, brother and sister have just been diagnosed with EDS. my brother had to have a heart valve replacement because of eds and my mom has been feeling the same as most of you for many years. she was never taken seriously by doctors. i am now seeking medical help after almost 10 years of showing symptoms and not knowing what else to do. It's nice to put a name to all the symptoms i've been having, im hoping now that the doctors will start taking me seriously. and that i wont be treated like a moaner and wont be told that im just makin a fuss.
I have been treated in a disgusting manner because of my eds. I was told for many years it was all in my head. I still get treated as if I'm drug or attention seeking. I don't go to the doctor unless I have no other option. I am treated like I don't matter. My children are accused of the same and get no support at school. This needs to stop now! I am sick and deserve the same treatment as everyone else with a painful debilitating condition.
I also have been treated ALL my life in an awful manner by many,inc the medical profession,I have been shouted at and ignored,laughed at and called"clever,as if too imply that I am making these things up,I am now very unwell once again,I long ago gave up trying to convince doctors,about anything,and mostly have to look after myself,if I do go to a doctor it is a rare event,which always results in argueing and so ongoing stress,was told by my new doctor at first appointment,before Christmas,Im fat,lazy,it doesnt matter if I dont get any sleep,I was accused of being a drug addict(wrongly)my ADHD,was laughed at..and I was told the new doc,didnt have time to look(or couldnt be bothered?) to root out my spine xray results,taken 6 mths ago!!!!Its ruined my life my treatment,and dont even ask about insurance,I was shouted at and many other things by company,who said,I Only had hypermobility,and that shouldnt be an issue,
For decades I was told it was all in my head. I had a wonderful Internist who spent 10 years trying to figure out what was wrong. I was diagnosed by geneticist at the UofI. I now watch my children having some of the same issues I did growing up and I wonder if it will be any easier for them. EDS was the connection for my IBS, PCOS, bladder issues, etc.. Connective tissue is THE building block of the human body. I have a rare Mix type, mix of HyperMobile, Classic, and Vascular.
For almost 16 yrs I was told it was in my head. I have seen numerous therapists, psychiatrists and finally a psychologist. They switched me from SSRI to SSRI as well as a couple anti-psychotics in an attempt to 'treat' my presumed mental disorder. I went through hell during withdrawals from switching all the meds., I was insulted, falsely accused, passed on to others, told I was overweight, out of shape, not keeping busy enough. The emotional damage that has been done to me at the hands of medical professionals will haunt me forever. I cannot trust anyone with medical authority. I am afraid of taking pills. I am depressed. I am lost. 6 months ago due to a family tragedy it was discovered that I really did have something. EDS Vascular. I was so physically and mentally exhausted from fighting all that time I just cried, out of sadness, out of fear, out of relief, out of anger. I thought things would get better with a confirmed genetic test stating I have vEDS, but quite the contrary. I had 1 doctor question the tests accuracy! It seems nobody wants to talk about it with me, they want a different doctor to be responsible. Once again I am being shuffled around. I have been told of the many tests that will be ordered for me but I have not had a single one performed yet. When did doctors quit being doctors? My experience has taught me that doctors can and do sometimes cause more injuries than they treat.