Managing Ehlers-Danlos syndrome: a physician's perspective

This video is part of a series about a rare condition called Ehlers-Danlos syndrome, and how working as a multidisciplinary team can improve patient outcomes. The videos include interviews with a consumer, Tracey, and members of the multidisciplinary team that help to manage her condition. In this video, Dr Fraser Burling speaks about his experience working as a dual physician and rheumatologist in a multidisciplinary team to improve health outcomes for patients, including Tracey.

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This series of videos describe the experience and treatment of one consumer with Ehlers-Danlos Syndrome (EDS). Three members of the multidisciplinary team (MDT) involved in the care and treatment of this person are interviewed.

We acknowledge that a MDT can be much larger than this and the video does refer to the wider MDT as an important aspect of diagnosis, treatment and care of people with EDS.

Owing to the diverse and complex presentation of EDS, Rare Disorders NZ (formerly NZORD) has produced guidance (funded by the Ministry of Health) that will help health care professionals and providers to assess, diagnose and plan care for people with EDS.

Such guidance will hopefully promote discussion amongst health providers treating EDS, resulting in improved care and outcomes for consumers.

ACC sourced expert opinion about the evidence-base of prolotherapy being provided by Dr Burling. This expert opinion stated, “Clearly there is support for this in the literature.”

At an ACC review hearing, the reviewer considered this treatment had been excluded from the ACC prolotherapy assessment and that it was “a generally accepted means of treatment within New Zealand.” As such, ACC paid the cost of prolotherapy for the consumer during the entire rehabilitation programme. The prolotherapy treatment described by Tracey has had positive results for her.

There is mention throughout the videos of the prevalence of EDS and indication that this is varied; prevalence will depend upon the definition being used and this will determine the inclusion criteria.

[alecbrown]

I have had eds/hms for over 40yrs, and so much stuff hits us out of nowhere, that frankly the patient becomes more expert. I would love to see a doctor or consultant who suffers from chronic eds/hms, , and let them experience the daily hell it is and the ignorance and cynism so many doctors treat us with.

[jackiemiles]

I was suicidal before my diagnosis and treatment plan. I had no hope. Getting the diagnosis and having doctors take me serious gave me hope and a reason to live again.

[Spanglefangle]

We also have larger amygdalas generally and more reactive flight or fight systems.

[donnacostarella]

This disorder affects the whole body and yes we get depressed it’s never ending too. Also Thank You to the dam vax everything escalated in flare since 3 dam years now pissed off is saying it mildly. Now compressions to deal with too besides the other issues we have grrrr

[AlisonCurry]

No one in my city will give me a treatment plan, all the rheumatologists reject me due to EDS... MY hand joints are so awful now and my movement and hypermobility. Idk why no one will help.

[ajohnson]

For 30 years no doctor has ever been able to give me a diagnosis. I’ve lived in severe pain for years. Barely able to walk, lost my job and have had 8 orthopedic surgeries. I was however kicked out of the Army in 1981 for EDS.

[mikatricktricken]

Hearing him at 4:00 made me tear up. My pain is so unmanaged and I'm starting to give up hope. Knowing this is progressive is making me give up... but hearing i could get back to a life again just gave me so much hope and happiness

[joshprice]

My stepdaughter was just diagnosed with EDS after years of trying to figure out what was going on with her. So glad there is treatment and things we can do!

[Chloe-iq-help]

In primary school i use to lie on my tummy and put legs over my head all the way up to my calf 😬

Prior to surgery I could stand with both feet facing backwards 😅

Lest I forget the tree climbing version of "chicken".. who could jump from the highest branch. My advantage came in when I landed from great heights and my joints would dislocate.. I'd just pop em back in!!

circus freak hours over here ..

Have totally tried to off myself many times yikes.

I feel so bad for my GPS over the years, they have to manage so many patients and so many different conditions. They never know about EDS but do their best.

Def heading back into suicidal territory as I age and things keep getting worse uhg. I just want to be able to work, use my hands properly, and find someone who can help with ehlersdanlos without it costing thousands of my nonexistent money.

[natronbetticus]

I'm 45. I've recently trained to be an RN in Canada, and have been practicing for about a year. I'd never heard of EDS before my girlfriend mentioned it last week. I'm almost certain I have it. Anyone know if chronic headache is a symptom?

[Rls_]

I feel like I'm too sick in too many ways to be helped. It's very unfortunate that the links listed here go to link not found results. I was hopeful I could give that information to my doctors and maybe get some relief. They've put me on depression and anxiety meds and have already increased them, within a year, but there's been no improvement. The reason for this is severe pain and poor quality of life are the cause of my depression and anxiety, but my pain meds haven't been changed or increased since I started them >20 years ago.

I've lost almost all hope of getting real help. I don't know what else to do and wish doctor assisted compassionate end of life were rights for every person. We shouldn't have to contemplate some violent suicide, when we could go peacefully and humanely with our loved ones around us instead. I'll never understand how it's the humane thing to do for animals, but not for humans.

[redsheppard]

What about depression because of burnout (I think) because you have been pushing yourself so hard to be normal without knowing what was wrong. And always thought you are just weird and not capable.

[lemonbade]

I feel like I’m getting worse every day and have no help from GPs here in UK.

[HeartOfTheSource]

Hi, what are the treatment options? My new Rheumatologist had just connected the dots on this with all my life long symptoms as for the being "double jointed" and palms flat on floor while legs straight thing, my yoga teachers were amazed and also the velvety soft skin people that hug me always say something like "you are so soft! Or you don't feel real". Traits most people seem to admire, yet now thinking they were symptoms all along . I'm overly sensitive to many medications. Side effects almost killed me so no more experiments. Was prescribed up to 18 medications at one time....Are there specific supplements needed? I've had POTS and vertigo since I was 2 years old, my parents disregarded it as me being sensitive to the environment. One of my children is also showing similar symptoms, also my youngest sister has had issues all her life too. I was misdiagnosed with Lupus even though all lupus tests showed negative so that was finally dismissed as a cause. Been in terrible pain and getting worse 😢 Is there really any hope that's going to be affordable? I'm currently disabled but fighting. I keep trying to make work attempts. Advice needed. Thank you.

[cynthiabemis]

My oldest son had ehlers danlos syndrome he had the worst kind and was hospitalized most of his life in and out of the hospital he passed away at the age of 33 . I was told that the eds is passed down from my mothers side and

[kat-ndun]

Thank you for posting. Fraser has saved my life. I would not be here without him, he is an amazing person and I owe him everything.

[shannongreenwell]

I have EDS and mine is the Classical type, mine is type two. I can do the splits as a child and I still can. I can stretch my shin on my hands, under my eyes and on my neck behind my ears. I live in constant excruciating chronic pain! I bruise easy and I fell at my work and it took me a while to heal and I still will trip when I am walking thus I rely on my cane to help with stability. I got my diagnosis from my Neurologist, because I, too have Epilepsy. But my Epilepsy is not due to my EDS. I am now being tested for POTS or another form of Tachycardia. I use a Wheelchair or a Rolling Walker at my church because the building is very big and by the time I get to the church sanctuary I would be in pain and out of energy as well as lightheaded and unable to enjoy the service and the sermon. My EDS has progressed in my vision, thus is why my eye doctor is keeping a close watch on my eyes.

[Ana.Forlin]

I wish you were in Atlantic Canada. I just want to stop living in pain and misery and being told that there's nothing wrong with me, but never having an explanation as to why my body is doing all these weird things it's doing.

[Bendylife]

My doctor just diagnosed me, bit I have no treatment plan. I was told in BC canada there is nothing available to help people with EDS. Super lost at this point.

[KW-ksih]

I need more info about this treatment. Anyone here with first hand experience? My shoulders dislocate on a weekly basis with daily spasms. I had a doctor when i was a teenager incorrectly diagnose me- do surgery on one of the shoulders and now its so loose that the muscle is ripping. The pain is terrible and my current ortho is telling me to just keep doing physical therapy or look at a shoulder fusion.