Opens profile photo
Follow
Click to Follow TheEDSociety
The Ehlers-Danlos Society
@TheEDSociety
The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Non-Governmental & Nonprofit Organization New York, USAehlers-danlos.comJoined June 2009

The Ehlers-Danlos Society’s Tweets

Allergy & Immunology Conference: 🔴The immune system explained⁠ 🔴#MastCellActivation & #HistamineIntolerance🔴Immunodeficiency & infection risk⁠ 🔴Autoimmune rheumatic disease and EDS⁠ 🔴Inflammation, pain, & urogynecological disorders⁠ Watch now: ehlers-danlos.com/eds-echo-event
EDS ECHO Events Series: Allergy and Immunology Recordings now available.
25
A great opportunity to read some of the work being done by teams at both & during International Bone and Joint Week.
Quote Tweet
This is International Bone and Joint Week. Dr @SallyPezaro highlights work and resources on childbearing with syndromes and disorders related to hypermobility, to help midwives to meet these individuals’ needs. Read Sally's article here: bit.ly/3eJ5CiK
Image
5
Many of the common cardiovascular autonomic symptoms relate to changes in posture. They occur when changing from a lying or sitting to a standing position, or with maintaining upright posture, and are improved but not always completely relieved by sitting or lying down.⁠
SITTING TO STANDING PULSE AND BLOOD PRESSURE TESTS - These tests are used to determine whether changes in blood pressure and/or heart rate may be the cause for (near) fainting. A person is shown sitting and standing to indicate the the test is from sitting to standing  and the sitting BP should be normal e.g. 120/80 pulse 70 and the standing reading overtly abnormal e.g. 90/60 and a pulse of 110 to represent an overt hypotension or postural tachycardia. A SYMPTOMATIC DROP IN BLOOD PRESSURE OF MORE THAN 20mmHg Is ORTHOSTATIC HYPOTENSION, and in the next box below it reads SYMPTOMATIC RISE IN PULSE OF MORE THAN 30 BPM (Adults) / 40 BPM (Children) Is POSTURAL TACHYCARDIA SYNDROME.
1
19
Show this thread
People only usually consider what they can see on the surface, and this can mean that we often find ourselves challenged by health professionals, employers, teachers, and even family and friends who can find it hard to understand. ⁠ ⁠
1
15
Show this thread
A time to bring awareness, education, and support to family, friends, co-workers, and the community. Despite challenging symptoms, EDS and HSD can often be invisible conditions, with a multitude of issues often going on inside. ⁠ ⁠
1
18
Show this thread
An absolute pleasure to have been a guest speaker again at another of ’s events navigating difficult topics with the aim of educating both professionals and the wider public to encourage a cohesive, objective and curious approach in regards to child protection
Quote Tweet
'Common Themes Evident in the UK in Relation to Fabricated Induced Illness (FII)' is our next session with Emma Louise Williams. Emma is known for her work as an independent child protection expert within the specialisms of FII and rare disease. #EDSPediatrics2022
Common Themes Evident in the UK in Relation to FII	Emma Louise Williams
2
12
Always an absolute pleasure listening to Dr Alan Hakim speak, winding up the ECHO Summit Series on Pediatric & Adolescent concerns in EDS & HSD. Unconscious bias an important topic & something all clinicians can & should constantly reflect on in our work. #EDSPediatrics2022
Quote Tweet
Today's final session of #EDSPediatrics2022 is with Rheumatologist, Dr. Alan Hakim, discussing 'Reflections on Unconscious Bias.' Dr. Hakim works closely with @TheEDSociety and International Consortium on Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders.
Reflections on Unconscious Bias	Dr. Alan Hakim
9
'The Long and Winding Road… Reducing Unconcious Bias' with Dr. Philip Bull is our next session. Dr. Bull is a Consultant Rheumatologist with a special interest in hypermobility in adults and adolescents, working at the One Hospital, Ashford, Kent. #EDSPediatrics2022
The Long and Winding Road… Reducing Unconcious Bias	Dr. Philip Bull
2
8
Really interesting insights from Emma Louise Williams here on FII on understanding the challenging situations that involve safeguarding concerns #EDSPediatrics2022 #EDS #HSD
Quote Tweet
'Common Themes Evident in the UK in Relation to Fabricated Induced Illness (FII)' is our next session with Emma Louise Williams. Emma is known for her work as an independent child protection expert within the specialisms of FII and rare disease. #EDSPediatrics2022
Common Themes Evident in the UK in Relation to FII	Emma Louise Williams
3
'Common Themes Evident in the UK in Relation to Fabricated Induced Illness (FII)' is our next session with Emma Louise Williams. Emma is known for her work as an independent child protection expert within the specialisms of FII and rare disease. #EDSPediatrics2022
Common Themes Evident in the UK in Relation to FII	Emma Louise Williams
9
Dr. Louise Tofts now presents 'The Scientific Evidence on Fractures and Bleeding in Pediatric Hypermobility and EDS.' Dr. Tofts is currently the Chair of the pediatric working group of the International Consortium on EDS and HSD. #EDSPediatrics2022
The Scientific Evidence on Fractures and Bleeding in Pediatric Hypermobility and EDS	Dr. Louise Tofts
4
'The Genetic Evaluation for Pediatric Patients Presenting with Fractures & Bleeding' with Dr. Ellen Elias, an active member of the pediatric group of the International Consortium on EDS & HSD, developing a pediatric approach & classification system. #EDSPediatrics2022
Image
2
Dr. Sarah Schwartz now presents 'Assessment of Fractures, Bruising and Bleeding in Infants.' Dr. Schwartz is a pediatrician, & an assistant professor at the University of Toronto, who founded the SickKids Pediatric EDS Clinic in 2017. #EDSPediatrics2022
Assessment of Fractures, Bruising and Bleeding in Infants
7
'Comorbidities in Pediatrics' is our next session with Dr. Verity Pacey. Dr. Pacey is an Associate Professor and Head of the Department of Health Sciences within the Faculty of Medicine, Health & Human Sciences, Macquarie University. #EDSPediatrics2022
Comorbidities in Pediatrics	Dr. Verity Pacey
14