Tragic case of yet another disease but the same ignorance!!

[brenanddave]

I was sent this by my brother saying isn't this the same thing happening to you!! And it is! To all of us. It is so heartbreaking. facebook.com/nzherald.co.nz...

[Cobalt1312]

Thanks for sharing this brenanddave, I used to think doctors treated me this way because of something I did, doubting whether I was really accurately reporting what I was going through - Then I started learning more and more about people who's lives were literally ruined by medical neglect and gaslighting. It's crazy. God complex doctors who think there are an army of psychosomatic people who are clamoring for their validation and attention, to the point of letting them die.

It is traumatic to have complex, disabling, medical issues you can't understand or sometimes even explain and then to be treated like you're making it up. EXPLETIVE.

[wedgewood]

That was shocking to read . I have lost most of my trust in GPs now , as a result of what happened to me when I had P.A.

So many doctors prefer to say “it’s all in your head “ rather than admit that they don’t know and are out if their depth . I worry for P.A patients who don’t know , or haven’t the means to find out about our forum, when they are being untreated or undertreated

I hope that there is somewhere for EDS patients to turn to in the U.K. as well as NZ

[Nackapan in reply to wedgewood]

EDS and POTS were caused by undiagnosed and untreated b12 iron and folate and vit D deficiency in my daughter.

To answer your question there is a charity for EDS.

Diagnosis still very difficult in the UK.

I pushed for referral after referral.

I think done to shut me up in the end as not easy.

Even though an awful diagnosis my daughter sobbed .

Believed. A label and recognition.

Had MH and fibromyalgia nd CF removed from her medical notes .

A wrong label of symptoms like this stops investigations

She was too ill to fight her cause .

Her body was shutting down.

Being told time and time again 'in was in her head'

Wrong dismissive labels.

Her brain did stop working properly.

Stuttering . Couldnt find words ,using wrong words .

( English graduate friends thought she wax mucking about ) couldnt process what they saw. All young.

A starved brain and body of nutrients as unable to eat, digest.

One Gp ,when she failed to arrive for an appointment booked that day as she eas on the floor having yet another POTS episode . Which isn't a faint but a fit .

He turned up at the house and gained entry via a neighbour and called an ambulance.

He is a good G.p .

Another general medical consultant started tests on yet another a and e visit.

A tilt table test

A consultant at Queens Hospital London.

All good .

Shoujd not be a lottery though .

Saying they don't know and referring on a must .

Took much time wasted in rheumatology when a teenager .

Yes rule out things but quicker and then move on.

All the above medics believed .

All did their jobs and carried on until a diagnosis and cause found .

An apology from one Gp for missing B12.

Many ,many others dismissive and wanted to give heavy antidepressant drugs.

Not believing in what eax I front of them ???

*Sending her down the mental health pathway.

PIP refused twice scoring zero .

Treated badly by a senior school when il.

Making her worse .

Even taking away the key to the disabled toilet???

( too long )

*Where she was starting to head then kept fighting back knowing they had missed something .

A pain clinic referral helped deal with symptoms.

Even that took a psychiatric slant that simply didn't work for her.

She tried. She tried everything .

She either can't or doesn't remember so much of what happened.

Now with 'labels '

Medication.

Regular b12 injections

Daily folic acid

Complete change of diet.

Gluten Free

Diary free

Fructose free

Eg free

Red meat free ( still can't digest it )

Now can tolerate chicken ,fish ,and many more foods .

A wheelchair .

She can get on with life,despite losing her teaching job and vocation.

(I made broth and she had teaspoons every 30 mins to avoid being tube fed .)

All food worked out by her .

The hospital dietician supported but did not lead .

The consultant at Queens thought a wheelchair necessary to get out of the house safely .

So yes .

Those alone I hope at least have good neighbours or friends .

It's truly shocking how you coukd be left to die.

I'm also shocked how those around me won't listen to the possibility of a b12 deficiency.

My ex colleague/ friend has a son with complex health needs from chrohns .

I've sent articles ect.

She still will not entertain he may benefit from b12 injections .

His bloods have been checked .

His b12 'in range' !!!!

With part of his bowel now removed .Ileum .

Nothing else I can do .

He is self harming as not eating refusing even vit D as not tracable.

I'm hoping this week they admit him.

Hoping not yet another case of missed b12 deficiency.

It's missed time and time again.

Often specialists miss the 'basics '

G.ps ate now doing the same ???

A simple trial of b12 may turn his psychiatric symptoms round.

In our eyes missing an obvious thing to treat amongst the severity complex surgery decisions .

I have also lost confidence.

Also have s filter of when to move onto next medic.

Need more medical staff. ( so many lost .....politics)

More training.

More research.

More continuity saves lives and time and money.

Should i post this ??

Bit of a muddle .

But a clear message of a ;

Missed b12 deficiency yet again.

Which initiated this maybe rant

Had megabolistic anaemia, low hb ,very low b12 very low folate ferritin vit D .

Was told the underlying cause years of undiagnosed b12 deficiency .

[wedgewood in reply to Nackapan]

Oh Nackapan , that’s just a true horror story of incompetence and neglect. I’m so sorry for you and your daughter , for you have both been through hell . She was lucky to have you through it all .

Good that you posted it , and thank you for revealing what can happen when one is fobbed off .

You are a valued member of this forum .

[JGBH in reply to wedgewood]

The incompetence of so many so called medical professionals is unbelievable! I too have lost faith in them a long time ago. I don’t feel safe in their hands.

[Narwhal10 in reply to Nackapan]

Thank goodness Nackapan, what a fantastic strong courageous woman and mother you are. You have fought tooth and nail for your daughter. She is on the road to recovery. 🦓

I hope to goodness your neighbour’s son gets B12 injections especially with Crohn’s disease and bowel resection.

Keep on your soap box about B12, as I do. I will preach until I am blue in the face.

🐳

[Wheat in reply to Nackapan]

Dear Nackapan, the story you relate is frighteningly awful, its almost incomprehensible. I m almost lost for words. I hope you both continue to improve.

I too know three people with signs of b12d, they won't listen. so sad and worrying. All best wishes .

[brenanddave in reply to Nackapan]

Dear Nackapan You have been on such an incredibly chellenging journey with your daughter! You wonder in life sometimes where are going to get the strength you need So much pain and heartache for such a basic and simple thing to have caused it I don't know how you get your head around that I am happy you have the love and support from this group! Sending you love and hugs and healing xxxx

[Narwhal10]

Thank you brenanddave,

I am deeply saddened to read that a young mother has unnecessarily died. She leaves behind her family and friends. My thoughts are very much with them. ❤️

The Scottish author J.M. Barrie wrote that ‘Life is a long lesson on humility.’

Chochinov used this theme for his 2010 research paper entitled, ‘Humility and the practice of medicine: tasting humble pie.’

ncbi.nlm.nih.gov/pmc/articl...

It highlights the Canadian physician Sir William Osler being found by colleagues trying to pass a tube into his stomach. He simply stated,

‘I want to know how my patients feel.’

Researchers at 2 Liverpool Universities, U.K. have also been collecting data, information and listening to the voices of those who are affected by Energy Limiting Chronic Illnesses.

They run webinars entitled Disbelief and Disregard: The Gendered Experiences of Energy Limiting Chronic Illnesses in England. 

The next event is 14th September 2023.

🐳

[WIZARD6787 in reply to Narwhal10]

Thank you for posting about this tragedy.

One of the many benefits of the writtings I have read on this forum is that my experience with the medical field is not personal or unique.

I never thought they were out to get me. I came to understand that they are about themselves and see my role in the relationship as to submit and the results are of little concern to them other than I submit.

[jade_s]

Direct link to the article for those that couldn't get the FB link to work : nzherald.co.nz/nz/beacon-fo...

😥 So sad and so shocking that a doctor at a hospital would say this just kind of nonsense - they should get their licences revoked!

EDS does indeed seem to be another one of these neglected, invisible diseases where people are not taken seriously.

So much collective knowledge about all these conditions exists, it's mind-boggling that so-called medical "professionals" are so ignorant.

[Narwhal10 in reply to jade_s]

Professor Karna Dev Bardhan (better known as Chandu) stated, ‘in every patient, if you listen there is a PhD.’

Sanders D (2016) Gluten Attack Penguin Random House, London.

[Hidden]

R.I.P. Stephanie

There's a woman who lives near me (rural Ireland), who's had health issues all her life, and was dismissed with antidepressants, she ended up spending a fortune travelling back and forth to England before finally being diagnosed with EDS. Turns out it's hereditary and both of her children also have it.

I think she's getting treatment for it here now (I've not seen her on Twitter in a while, but the algorithm does unfollow people without your knowledge all the time). For definite there's no specialist for EDS anywhere in the Republic.

[Wheat]

This case is tragic. Tragically it s all too common. I cannot trust gps or medical staff, it's dangerous to do so.

[Hockey_player]

Blah! Canada can't see news from facebook anymore. Is it possible to explain more what the article is about so I can find it?

[brenanddave in reply to Hockey_player]

Tributes have poured in after Stephanie Aston, the young woman who publicly stood up for herself after being told she was faking her symptoms by doctors, has died.

Ehlers-Danlos Syndromes New Zealand described Aston as a “beacon” for those with the illness in a tribute to her on Facebook.

“She has also been a beacon for many in our community. Hosting multiple events in Auckland throughout the years and being active in our support groups and helping give direction to many, including myself.

“Even until the very end she was keen to help anyone and lend an ear. You will be sorely missed. I hope you rest well now.”Ehlers-Danlos Syndromes New Zealand founder Kelly McQuinlan said Aston always maintained her compassion and was consistently thoughtful of others, despite what she was going through.

“She was incredibly supportive and still up for a laugh till the end. For those who were lucky to know her [they] would speak to her strength and resilience, along with their amazing, supportive and thoughtful friendships and connections. Regardless of her lack of medical care in NZ that she should have received a long time ago as a preventative to her untimely departure, she continued to have hope for anyone else who may be navigating the same systems that failed her.” McQuinlan and Aston helped create the non-profit charity back in 2017, and McQuinlan said her legacy will continue to live on through the advocacy efforts they make to help enable systemic change within our failing health system.

“Her friends and family will miss her immensely.”

Facebook page Ruby’s Voice Trust, which highlights the death of another young woman after misdiagnosis, also wrote a tribute for Aston.

“Our beautiful friend Steph gained her wings on Friday.

“She was super intelligent and completely sane. Had a wicked sense of humour, mischief, kind and generous, and a lover of small people… auntie to so many.”

The post described Aston as a “blessed” presence in the world. Advocates for EDS have long said that EDS patients notoriously struggled to get acknowledgement of their condition and this was traumatising.

“Hers is another tragic story of appalling health care and the battle of being labelled with factitious disorder (all in your head).

“Steph was one of 5 in 2018 who hoped that raising awareness through media would help. Unfortunately, it didn’t.”

“Thank you Steph. We love you.”

Aston was 25 flatting in Mt Albert, Auckland when the effects of Ehlers-Danlos syndrome [EDS] began to take hold in October 2015.

Like many adults with EDS, Aston did not know she had the inherited condition and each illness or injury over the years was treated by individual specialists.

Aston was diagnosed by three specialists with EDS, a genetic connective tissue disorder.

But an Auckland Hospital doctor, whom the Herald agreed to call Doctor A, suggested she was not seriously unwell and indicated she was causing her illnesses.

In a complaint to the Health and Disability Commissioner [HDC] in November 2016, Aston said she strongly disagreed with a factitious disorder diagnosis and believed it continued to have a detrimental effect on the care she received and the way she was treated.

This included rectal examinations, being on a psychiatric watch, accusations of eating disorders and self-harm, suggestions her mother was harming her and that she was faking fainting spells, coughing fits and fevers

International EDS expert Dr Heidi Collins previously told the Herald that psychiatric misdiagnoses were common among EDS patients and the challenge was understanding why some psychiatrists were “absolutely unwilling to see or accept an underlying physical issue”.

[brenanddave in reply to Hockey_player]

I've managed to paste it for you!