Consumer story: Living with Ehlers-Danlos syndrome

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, Tracey speaks about her experience as a consumer with Ehlers-Danlos and how working with her team has significantly improved her health.
An international expert opinion was received on the treatment described in these videos. Download a copy of the opinion, written by Dr David Rabago from Penn State College of Medicine: www.hqsc.govt....
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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.”
www.hqsc.govt....
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.

[@candice2875]

90% of my doctors misdiagnosed me with mental illness. They simply didn’t want to believe I had severe widespread pain that prevented me from getting out of bed as young as 17. The other 10% misdiagnosed me with either rheumatoid arthritis or fibromyalgia or lupus or Marfans. Until one day a very experienced orthopedic spine surgeon sent from heaven figured it out and I started to be able to manage the symptoms after that.

[@이은주-w1m]

Can you kindly inform me of that surgeon you have found?

[@georgiareed7743]

Was your onset of pain sudden?

[@Pandagurl218]

So happy you got your diagnoses and help, I wasn’t diagnosed until after my first son was born with severe infantile scoliosis. Being in the womb curved his spine. Every single pregnancy has a catastrophic event (stroke, multiple dvt, and placental degrading) I’m 33 and the quality of my life is horrendous. Every day I hurt, my back is severely arthritic and diagnosed with an aortic aneurysm. I hope you many gentle healing and coping

[@candice2875]

@@Pandagurl218 thank you and I hope the best for you and your son. ❤️ I understand it is difficult. I’ve already had 27 surgeries for paralysis, spinal instability, and aneurysms. I try to enjoy life as much as possible and always be happy. That is the best strategy I’ve found to cope with it. Surround yourself with people you love and let them know you love them. If you’re happy, you feel so much better physically as well.

[@candice2875]

@@이은주-w1m My surgeon was Michael Dittmar. He practices in Mexico. I thought I had given you his name a few months ago but now I can’t see my old comment so I put it there again. 😊

[@hapahoulew9833]

I think I now know what has been wrong with me all my life! For me it started when I was 9 yrs old. Throughout my life each problem has been isolated and diagnosed individually. Never has a doctor put all my diagnoses together! But when I go down the symptoms almost everyone I have! At my age now, I have gotten a wheelchair for out of the house activities…a cane for indoors…and as many kitchen tools for crippled hands as I can find.

[@KennethWilliams-c4w]

I was diagnosed at nine from across the room from my doctor I was diagnosed that early because of the injury's I had I am now ten on my grandpa's phone this is what I want to do when I get older make msa video's or informational videos do hair and make art this makes me so happy 💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕❤❤❤❤❤❤💞💞💞💞💞💞💞🥰🥰🥰🥰🥰🥰🥰🥰🥰

[@jnanashakti6036]

A lifetime of injury and other symptoms are all coming together. I need to get tested. Thank you for sharing!

[@shannongreenwell1278]

I have EDS and yes, it has wrecked havoc on my body. I have chronic excruciating pain, if I get injured or cut it takes me a long way to heal. I have chronic fatigue, and sleep apnea. I bruise easy, and I have soft skin that’s like dough, and it’s stretchy under my eyes, behind my ears and on my hands.

[@princess_kraken]

It took doctors years to discover and diagnose me with EDS. I’ve had doctors think I was lying

[@viviengiannacaple-chuley4408]

I’m sorry. I understand

[@Loveandkindness33]

I was also in my late 30’s when finally diagnosed. And this was just last year. Having validation that it’s not just “all in my head” has made massive changes in my health. I have hEDS, Cranialcervical Instability, Mast Cell Activation Syndrome and PoTS. In the past I also suffered from Idiopathic Intercranial hypertension. This was absolutely Excruciating to deal with. (Only God got me through it!) I’m also currently 26 weeks pregnant and the hormone Relaxin isn’t helping matters much…

[@melissafarrugia9531]

The strength of a lady is so strong sometimes that it is hard to comprehend, it’s surely God beside us

[@ann-mariewalsh4955]

Attempting to advocate for better physician awareness I often got push-back messages that this was not a financial concern. The mindset of hearing hoofbeats and thinking of horses, not zebras only leads to misdiagnosis. I was mis-diagnosed with Lupus and treated for 23 years for that which I did not have as well as mis-diagnosed with MS and treated for 10 years for that condition. As a design and construction project manager, cost estimating was part of my skill set. I reviewed the treatments, medications and diagnostic imaging ordered (no physician visits in estimate) and the approximate cost treating me for conditions I do not have $800,000 - 1,000,000. Further the multiple cytotoxins and biologics have left a permanent scar on my liver. We must do better going forward.

[@mobilechikane8574]

How did you get diagnosed with MS? Usually that's easily visible with MRIs?

[@sjcobra84]

My girlfriend has this. I hate what it's done to her life. 🙁

[@MuhammadAhmad-eh1db]

Hi, I have EDS which has negatively affected my quality of life. I have consulted a variety of doctors but not much relief. Please guide me on how to use these injections obviously with the help of a doctor. Will be grateful

[@jeremysargefield9434]

Hi I’m from Edmonton Alberta Canada i really need help there’s no drs here to help with EDS and there telling me only women can get EDS and I know it’s not true or is it I’m entersex I don’t know if that makes a difference please get back to me. I have no life I can no longer work every time I try. I pop my joints I get injured I can barely move. Takes me about four hours just to get out of bed. It’s to the point where I’m extremely depressed. I’m begging you help me.

[@dhayes1541]

Hi Jeremy. I live in Red Deer. I have EDS. Alberta is truly a wasteland for medical care for EDS. Other countries are moving towards treatment and care for connective tissue disorders but Canada is doing nothing. How are you coping?

[@sherifelfeel1495]

God bless you ❤️❤️❤️❤️

[@jackiesicilian5720]

Does it always present with dislocation?

[@raeboudreau1174]

not always just a common symptom -a pcw

[@dianabernal6560]

no .. but ehlers-danlos with hypermobility does.

[@fe3187]

Sublocations also count. I roll my ankles about twice a week just walking or standing and have these little nodules from the damage there. It never hurts when it happens (partly from adrenaline/endorphine surges) but everything kindof hurts all the time. I couldn't see the nodules myself because you have to stand perfectly straight for them to show and look with a trained eye, but the geneticist evaluating me recognized the wear and tear on the joint coming in and out of socket even though I'd never been diagnosed with a dislocation.

[@katherenewedic8076]

Thank you

[@christianigiovannini6741]

All thanks to Dr Aba for curing me from EDS Am forever grateful