Progress in the Psychiatric and Psychological dimensions of SED:

"It is not just in your mind"

Prof. Antonio Bulbena-VilarrasaMD, PhD, MSc (Cantab)

Distinguished Professor of PsychiatryChair of the Department of Psychiatry U Autonoma Barcelona

Progress in the Psychiatric and Psychologicaldimensions of SED: "It is not just in your mind"

1. Twoapproaches:“Hysteria”vsproperdiagnosis

2. Survey:FromEDSSymptoms toEDSExperiences

3. UpdateonPsychiatricaspects(neverONLYthem)

4. Towardsanewmodelofillnessunderstanding• TheNeuroconnective Phenotype(Neuro-Psycho- Somatic-Environment)

Contents

The two approaches of the Psychiatric/Psychological dimensions of Ehlers Danlos S.

1. Oneveryclassicalandwidespreadbutunfortunatebywhichsufferershavebeen"accused"ofhysteria,factitiusorsimplyexaggeratedpeople;thishascreatedstigmaandgenerateddiscomfortandangerandrejection.

2. Themodernoneisbasedintherealpsychologicalandpsychiatricsufferingnowwelldocumented,bywhichsufferershavemorevulnerabilitytobecomeanxious(clinicallyrelevant)andtobemoresensitivetomanystimuli,notonlyexternalbutalsointernal(bodyperception).Despitethisdisadvantages,someadvantagesmaybeidentified too.

CLUE:Psychological(psychiatric)andPhysicalsymptomsMUSTbeidentified,respected,andtreatedattheverysame(andHIGH)level.

Q31: What symptoms are you experiencing consistently?

63

Q50: Has a present or a past doctor made any of thesestatements about your condition?

64% of respondents reported they had received negative orinvalidating comments from providers.• “Itisallinyourhead”(66.7%)• “thereisnothingwrongwithyou”(67.3%)• “Youshouldn’tbeinthatmuchpain”(62.5%)• “Youworrytoomuch(59.2%)• “Youshouldbehappythatwecan’tfindanythingwrong”(49.1%)• “Youarehypochondriac(29.8%)• “Youarelookingforattention(23.4%)

Thisreflectsalackofunderstandingofthecondition,aswellastheproviders’frustrationwithachronicillnessthatissocomplex.

Total responses : 2544

Number of Countries: 26

Q18: What statements reflect your EXPERIENCE being diagnosed with EDS?

?

PsychopathologyinJointHypemobility SyndromeEhlersDanlos III

Disorder Published evidence

• Anxiety Dis. ++++++• Mood Dis. ++• Personality Dis. +• Addictions +• Psychosis +• Eating Dis. +• Neuro-develop. Dis. ++• Cognitive Impair. +