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Asher Wolf @Asher_Wolf
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Full house at the Ehlers-Danlos Society Conference at Macquarie University today: @LaraBloomEDS opening the event
"Hypermobile EDS is probably more prevalent than diagnosed." #AustEDSConf18
. @LaraBloomEDS talks about a doctor at a conference who gave a talk denying EDS is real, despite the genetic data. #AustEDSConf18
"There are EDS patients with PTSD due to medical trauma, due to their inability to try to get treatment and how they are treated by doctors. Patients are ending up in wheelchairs or dying without access to appropriate treatment." #AustEDSConf18
The EDS Comorbidity Coalition: they've been investigating the conditions we know as patients that go alongside EDS. #AustEDSConf18
Genetic research is about to take place into Hypermobile EDS, thanks to a large grant
Sign up to the Global Registry for EDS and Related Disorders!…
Dr David Sillence receiving a lifetime achievement award from the Ehlers-Danlos Society… #AustEDSConf18
Dr. Felicity Collins, RPA geneticist, is giving overview of the different types of EDS… #AustEDSConf18
I feel like I should point out... the room here at #AustEDSConf18 is overwhelmingly filled with women
Hypermobile, Classical and Vascular EDS is autosomal dominant: 50% chance of passing it in to offspring. Dermatospraxis EDS and rarer sorts of EDS is autosomal recessive. #AustEDSConf18
Classical EDS was the first form of EDS described. #AustEDSConf18
Genetic basis of hEDS is likely polygenic. The summative effect is important. #AustEDSConf18
Dr Felicity Collins: pls sign up to the Global Registry to help us try to identify the genes behind hEDS… #AustEDSConf18
Dr Helen Cohen runs the only pain management clinic for EDS patients in the U.K. (We don't have any specific clinics of any sort for adult EDS patients in Australia)… #AustEDSConf18
"Do not use or give patients the label 'Benign Joint Hypermobility Syndrome': it's not benign!" says Dr Helen Cohen. #AustEDSConf18
Hypermobility Spectrum Disorders and hEDS: everyone on the spectrum may need various treatments. #AustEDSConf18
With hEDS you get pain *everywhere* all the time, not just in a couple places - it overloads the brain, becomes a self-fulfilling circle of wound-up pain you can't switch off, known as Central Sensitisation Syndrome. #AustEDSConf18
There are multiple morbidities associated with hypermobility, but there is not clear association yet. #AustEDSConf18
Hypermobility can be really problematic, patients end up in ERs a lot and are referred to multiple specialists. There's a big cost to the health system [and patients]. #AustEDSConf18
Session on navigating local healthcare issues and the NDIS: the slide screen just switched itself off, inexplicably. Crowd lol'd. Good metaphor for trying to get assistance with EDS. #AustEDSConf18
One patient talks about always taking a print out of issues. Being specific with objectives when attending a medical appointment. Talk about one issue at a time and use the language of your conditions as much as possible. #AustEDSConf18
Jan is talking about physical therapy rehab for children with EDS: it's important to have what you need in the forefront. Find a key person in your team of health professionals who can drive your health goals. #AustEDSConf18
I really wish we were hearing more from ppl working with adults rather than children with EDS in Australia. It's frustrating to hear professionals talking about health treatment pathways that are difficult to access as an adult. #AustEDSConf18
One patient talked about being rejected from the NDIS and that even the process of thinking about what she needed to access better health was useful. #AustEDSConf18
Helen (an NDIS service provider) talks about the challenges of providing support to people with EDS in rural and remote settings. Building contacts and supports is really important. #AustEDSConf18
One EDS patient talks about having multiple hernia surgery. The gvt took away the Medicare item number for the surgery - it cost $35k for abdominal-plastic surgery. Hernias are a common issue for ppl with EDS. #AustEDSConf18
One patient talks about getting messed around by specialists who doesn't understand the fragility of EDS patients and cause extra injuries. #AustEDSConf18
My comment: report medical harm formally, first to your hospital/GP's surgery and then to your Health Complaints Commissioner and Health Minister and Safer Care. You shouldn't need to act as a doctor yourself to get treatment. #AustEDSConf
We're only just beginning to discuss medical trauma and impact of delayed diagnosis for EDS patients, says one panellist. #AustEDSConf18
. @LaraBloomEDS talks about the fragmentation of support groups: we need to come together.

It's time for an Australian EDS Society. #AustEDSConf18
Managing everyday life with EDS/HSD - a talk by Dr. Louise Tofts, who manages a kids rehab. #AustEDSConf18
Threats can trigger symptoms associated with EDS and comorbidities. Symptoms are often stress sensitive. Planned surgeries, changes in environment can trigger stress that leads to deterioration. #AustEDSConf18
Elkhound assistance dog sighted at #AustEDSConf18, currently focused on a muffin
Try to down the fight or flight response to dampen the triggers for symptoms. Eg. Gastric symptoms #AustEDSConf18
There can be an initial *worsening* of symptoms as the body reacts to the stress of beginning physical rehabilitation. #AustEDSConf18
Prioritise functional goals: eg. Being able to shower/get out of bed to go to the bathroom. Sleep is crucial for collagen healing. Sleep deprivation leads to inability to heal. #AustEDSConf18
Sleep cycle reversal or poor sleep cycle is a clear sign of autonomic dysfunction potentially due to stress triggers. We need to treat it #AustEDSConf18
Use a diary for pacing: avoid the boom/bust cycle with fatigue. Do less, but log activities. #AustEDSConf
"We can start from anywhere with rehab - I've had patients that couldn't swallow that are now walking and back at school." #AustEDSConf18
"If you need to lose weight you still can..." ummmm. Metabolic resistance, Lipedema etc? #AustEDSConf18
Oh good, we are getting a lecture on weightloss. I'm out for the rest of this talk. Walking out. #AustEDSConf18
As someone who has lost 30kgs in 6 months - and understands how complex weightloss and maintaining healthy weight is - this talk was just irritating as hell
Also, once again a paediatric specialist talking at grown women. Care for EDS adults patients is disjointed because we don't address adult issues with specialists for adults.
Genetic Diagnostics: The Australian Perspective - a talk by Prof. David Sillence. #AustEDSConf18
You can get Whole Genome Sequencing done for AUD$6000 in Sydney. #AustEDSConf18
Comparative Genomic Hybridisation Microarray is being used at Sydney Genome Diagnostics. #AustEDSConf18
Bumped into @JadeBarclay (earlier panelist) outside as well during the earlier talk in the section about weightloss. "I heard there was this woman in Melbourne making a *fuss* about EDS... can I hug you?!" So awesome. #ausedfxon18
If you were tested before 2016/17 you wouldn't have had a full genetic panel including all EDS subtypes. #AustEDSConf18
Prof. Sillence walking us through a case of a man with *profound* hypermobility whose condition was labelled as "benign" until Whole Genome Sequencing found other issues. Just awful. Clear from looking at photos that he was profoundly hypermobile. #AustEDSConf18
Barriers to precise genetic diagnosis and the need for multidisciplinary care. #AustEDSConf18
"The future is accessible." #AustEDSConf18
When you go to a conference where a bunch of ppl have food allergies and MCAS. Gluten free, vegan... #AustEDSConf18
Chatting with Katie Hirneth, an EDS care-giver: her question is why MH plans get 10 sessions while Complex Care Plans for physio only get 5 sessions. #AustEDSConf18
EDS doesn't discriminate, but health services are worst for EDS in remote and rural Australia, disproportionately impacting Indigenous ppl with poorer healthcare for EDS. #AustEDSConf18
Missed a section of the conference because I sat down to chat with Prof. David Sillence. #AustEDSConf18
Prof. Sillence told me things have been going backwards in Australia for ppl with Ehlers-Danlos in recent years. Children with access to diagnostic services are "graduating" to adulthood to find no centralised, multi-disciplinary care for adults with EDS. #AustEDSConf18
Funding needs to be properly granted for genetic testing of ppl with EDS and physicians and geneticists need an attitude change and education, particularly around the complexity of EDS & genetics. (h)EDS is not benign. #AustEDSConf18
Next talk: Dr. Heidi Collins talking about GI issues & nutrition in EDS. #AustEDSConf18
Dr Heidi Collins: "there is no diet or supplement that can cure EDS." #AustEDSConf18
Changing diet is mostly about managing comorbidities and better management of EDS symptoms. #AustEDSConf18
If you've been diagnosed with EDS, you have a responsibility to yourself to learn about nutrition. #AustEDSConf18
Over-consumption of carbohydrates is a vicious cycle. Fructose should also be avoided. #AustEDSConf18
Eat more omega 3 and less of omega 6. Consumption of omega 6 is linked to inflammation. #AustEDSConf18
"Ppl with EDS have problems with retaining salt. They drink lots of water and spend half the day in the bathroom peeing it out." Oral rehydration fluid is recommended (hydralyte.)" Someone may have whispered "yes" in the audience. #AustEDSConf18
"Far too many medical professionals think EDS patients have an eating disorder when in fact they have GI issues." Clapping from the audience. #AustEDSConf18
GI issues are common and disabling in EDS. #AustEDSConf18
"EDS patients are the canary in the coal mine in terms of reactivity to the Western diet." #AustEDSConf18
Journal food to figure out intolerances. #AustEDSConf18

I kinda fear how much of my life is gonna be taken up on journaling sleep/physical rehab/diet ....
B6, magnesium, b12 and d are the most common deficiencies in EDS. Ppl may need IV supplements and if you're taking it orally you need to continue taking it everyday. #AustEDSConf18
Don't use collagen supplements with EDS as we can't adequately process it anyway. Expensive and useless. #AustEDSConf18
Dr. Heidi Collins: "it might not be gluten itself that you're allergic to in wheat." #AustEDSConf18
Dr Helen Cohen is now discussing how to manage joint dislocations with EDS. #AustEdsConf18
"We know the lot of you [with EDS] are rubbish at knowing where your joints are. Half the room walked into the doorframe on the way through earlier."
Physical deconditioning makes everything worse with EDS. #AustEdsConf18
In ppl with hypermobility, muscle patterning is different: some muscles are over active and some muscles aren't activating. #AustEdsConf18
You get acute pain as well as chronic pain. When you get muscle spasm when a joint is dislocated it can lead to a panic attack. The more stressed you are the harder it is to get the joint back in place. It's a vicious circle: #AustEdsConf18
Hip snapping in EDS is usually subluxations, not dislocations. #AustEdsConf18
Surgery won't help because muscles will style pull the joint apart again. #AustEdsConf18
"Create a dislocation response plan that doesn't involve the need to access A&E." #AustEdsConf18
A dislocation plan to calm down the sympathetic nervous system to place a dislocated joint back in place. Give it time. #AustEdsConf18
If the joint goes cold, very numb or discoloured you may need A&E. #AustEdsConf18
"You may need an A&E plan so the hospital doesn't think you're an AOD/MH patient." Yeah, tried that with a GP referral letter. Didn't work. #AustEdsConf18
Avoid/refuse offers of nitrous and fentanyl lozenges: if you hypermobility you may be in hospital A&E frequently and can quickly develop an addiction. #AustEdsConf18
Stanmore triangle. #AustEdsConf18
"If you have muscle patterning, surgery will most likely fail." Try non-surgical routes instead. #AustEdsConf18
If you have EDS, you actually need a physio. Don't try to fix yourself with self-made-up exercises because you won't know where your joints are and what damage you're doing
Sitting in a session on Postural Orthostatic Tachycardia and physical rehabilitation. Pacing and stepping up slowly is important. #EDSAus2018 #AusEDSConf18
Blood pressure and heart rate monitoring devices are useful for POTS physical rehab. #EDSAus2018 #AusEDSConf18
Stepping up slowly with physical rehab is important. It's only effective when done properly and consistently. #EDSAus2018 #AusEDSConf18
Afternoon tea. #EDSAus2018 #AusEDSConf18
Meeting on getting a Melbourne EDS support group set up to work with the Genetics Support Network. EDS patients need proper diagnostics and multidisciplinary care. #EDSAus2018 #AusEDSConf18
Session on fatigue and EDS. "Nothing about us without us." #AusEDSConf18 #EDSAus2018
Pain is bad but fatigue makes EDS patients unable to function. #AusEDSConf18 #EDSAus2018
Just because fatigue is prevalent doesn't mean it's diagnostic. A lot of diseases have fatigue as a symptom, but it's not diagnostic. #AusEDSConf18 #EDSAus2018
Fatigue is a prominent disabling symptom in medical and neurological disorders. #AusEDSConf18 #EDSAus2018
"I'm so tired my tired is tired." hEDS patients have trouble garnering energy to get themselves into bed and to fall asleep and stay asleep. #AusEDSConf18 #EDSAus2018
Oh I really like Assoc. Prof. Leslie Nicholson's talk on fatigue and hEDS. "I don't like the Beighton Score." Her team uses the Hakim 5 in diagnostics instead. #AusEDSConf18 #EDSAus2018
Also, I really like the work by Anne Krahe at University of Sydney Medical School - Prof. Leslie Nicholson's colleague. Quantative research I can actually use. #AusEDSConf18 #EDSAus2018
117 participants in Prof. Leslie Nicholson's study. Average Beighton Score was 5.8. Average btwn 9-10 painful joints. 1-2 low force fractures on average. Urinary incontinence on average on a scale of 0-100 was 38. #AusEDSConf18 #EDSAus2018
79.5% of the hEDS/HSD cohort studied by Prof. Leslie Nicholson had severe fatigue. #AusEDSConf18 #EDSAus2018
When you're dissatisfied with the way your condition is being managed it contributes to fatigue. #AusEDSConf18 #EDSAus2018
"We need to diagnose early. I didn't know anything about hypermobility until I started working with someone on her phd." I bet Prof. Nicholson is talking about Anne Krahe. #AusEDSConf18 #EDSAus2018
"We need multidisciplinary care. There is no care without a team. And that's not happening for adults with EDS right now. Make or find your own team." #AusEDSConf18 #EDSAus2018
You get poorer outcomes as a result of iatrogenic care. #AusEDSConf18 #EDSAus2018
You can participate in @JadeBarclay's phd study. #AusEDSConf18 #EDSAus2018
Pain is always an output of the brain 100% of the time. Pain does not equal the amount of tissue damage. It's real regardless of if you stepped on Lego or had a car accident. #EDSAus2018 #AusEDSConf18
"There is no physical cause for your pain," is an non-helpful phrase for patients who live with pain everyday. #EDSAus2018 #AusEDSConf18
Ppl with HSD/hEDS are six times more likely to have Central Sensitisation Syndrome than other individuals. #EDSAus2018 #AusEDSConf18
With CSS the pain is *real* and needs to be treated. #EDSAus2018 #AusEDSConf18
Without health professionals talking to each other as a multidisciplinary team for patients, EDS patients miss out on care. Most care around CSS is disjointed and unconnected. #EDSAus2018 #AusEDSConf18
Dr. Verity Pacey is talking about what a multidisciplinary paediatric clinic for EDS pain management looks like. This is nice but doesn't exist for adults in Australia in the public system right now. #AusEDSConf18 #EDSAus2018
Exercise can be analgesic in nature, but intensive (5-7 times a week, 6-8 weeks) and being done with supervision of a physio. 30-40% reduction in pain. Yeah, Complex Care Plan gives 5 physio sessions per YEAR. #AusEDSConf18 #EDSAus2018
So all the things we've been told can be particularly useful aren't funded or accessible in the public system for adults: physio, multidisciplinary care, genetic testing, hydrotherapy... #EDSAus2018 #AusEDSConf18
I guess what today has reinforced is that healthcare is currently non-accessible for adult EDS patients in the public health system. #EDSAus2018 #AusEDSConf18
Nearly 80% of hEDS patients have severe fatigue and most have chronic pain. We're told we need intensive, specialist, multidisciplinary care teams for ppl with EDS, but it's not funded in Australia. #EDSAus2018 #AusEDSConf18
I have to go catch a plane: it was great to meet so many EDSers today and apologies if I didn't get to chat with you. Next time! #EDSAus2018 #AusEDSConf18
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