Updated: May 1, 2022
Rosie Ashcraft in happier times with her kids (all photos: Rosie Ashcraft)
By Spencer van Vloten
August 30th, 2021
In the first entry of 2-part series highlighting the systemic barriers that persons with rare disorders face, we meet 35-year-old Rosie Ashcraft.
When Rosie was at her weakest and most vulnerable, she looked to BC's health care system for support, but the response she got would send her into a downward spiral of depression and desperation.
Victoria's Scarlit-Rose Ashcraft, better known to friends and family as Rosie, had big dreams.
Gifted with versatile creative flair, she wrote poetry, performed in theatre and dance, and recorded an indie synthpop album -Dreamer Queen Not Under the Machine - that received critical acclaim.
Having overcome a difficult childhood in which she was bullied due to her Asperger's, Rosie was determined to make up for lost time and enjoy her young adulthood, making an effort to focus on self-care and pursuing her artistic goals.
Rosie with husband Nelson and their boys, before her symptoms grew unmanageable
She also had a loving family, consisting of husband Nelson and their 2 boys, all of whom supported her in her creative journey and provided extra sunshine in her life.
All told, things were going pretty well for Rosie, but she would soon go through major changes.
In her mid-20s Rosie started noticing changes to her body, ones that just didn’t seem right for someone her age.
Rashes began to appear on her face; she developed serious dental problems and deep joint pain, and also rapidly lost weight—so much that she began double layering her clothing to bulk up her shrinking frame.
Increasingly concerned about her health, she was referred to a rheumatologist. A diagnosis of fibromyalgia followed, and though it didn’t seem quite right to her based on her symptoms, she wasn't sure what else it could be.
When out with her boys Rosie started needing the support of a cane and frequent rests, and she began to rapidly lose weight
That changed following a birthday party, when Rosie met a woman with strikingly similar symptoms to her own.
Only this woman had been diagnosed with Ehlers-Danlos syndrome (EDS), a rare genetic disorder affecting the connective tissues which hold the body together.
Spurred on by the chance meeting, Rosie began researching EDS, and the more she learned, the more she found that the condition was nearly a perfect match for what she'd been experiencing: joint hypermobility and looseness, easy bruising, neck pain, and dental problems among many others.
Armed with this new information, she returned to discuss the issue with the GP who'd strongly supported and endorsed her diagnosis of fibromyalgia.
Although she entered his office looking for help, what followed kick started an ordeal that would spin out of control.
What followed kick started an ordeal that would spin out of control
Her doctor immediately turned cold, frustrated that she’d question the initial diagnosis and now doubtful that she was telling the truth about her symptoms. They treated her like she was crazy and refused to re-refer her to a specialist to have the diagnosis amended.
As a result, Rosie continued to struggle with physical and emotional pain, which led her to a psychiatrist for a mental health assessment
It would be a meeting she’d regret.
The psychiatrist’s report noted that Rosie was socially awkward and seemed uncomfortable, which, instead of being interpreted as signs of her Asperger's, was seen as dishonesty. It also included cruel comments and twisted her words in an all-out assault on her character.
The psychiatrist diagnosed Rosie with factitious disorder – with no proof and with existing diagnoses that were ignored - meaning that she was being accused of fabricating her illness.
The report and diagnosis stung Rosie. To be dismissed as a mentally ill liar, when all she wanted was to improve her health, was tough to swallow, and it created a new set of obstacles.
Rosie was now facing an even bigger challenge.
The psychiatrist’s diagnosis of factitious disorder led to her being 'blacklisted' and pre-judged by other doctors, and her original doctor wouldn’t support her because she’d questioned his diagnosis.
Without a formal diagnosis of EDS, the treatments she needed were considered elective and therefore uncovered.
These included physiotherapy (which had to be implemented early to be effective), naturopathic and nutritional therapy, pain relief therapy, stem cell therapy, and spinal fusion, and all of them were costly—some as high as $90,000.
Unable to afford such a high price tag, and with outreach to public representatives yielding no results, Rosie gave up on getting medical treatment.
Rosie's condition grew worse, leading to trips to the ER (right)
Frustrated, depressed, and feeling hopeless, without any support from a health care system that showed little understanding of EDS, she declined rapidly.
The pain grew unbearable, especially in her neck, and her weight continued to drop until she was little more than a sack of bones.
Recognizing her declining condition, and desperate for help, At 29 Rosie travelled to the UK on an expenses paid trip, in order to host an autism convention in which she was also
nominated for an award for her 'A Girl Outside the Box' blog.
However, her body could not handle the pressure and at the tail end of the convention she suffered a severe autonomic crash which was so profound that British Airways deemed her physically unfit to make the transatlantic flight back home.
While stuck in the UK for a month recovering, she met with Dr. Alan Hakim, one of the world’s authorities on EDS.
Unlike local doctors who’d been cold and skeptical, Dr. Hakim found that Rosie did indeed have EDS and diagnosed her as such. He called the way she'd been treated back home 'disgusting'.
Dr. Hakim found that Rosie did indeed have EDS. He called the way she'd been treated back home 'disgusting'
Buoyed by the diagnosis and Dr. Hakims confirmation that Rosie did indeed have all the classic genetic traits of EDS, she was hopeful that her condition would be taken seriously at home and that her treatment at would improve.
The response she got was much different however. For several years after Rosie returned the local health care system maintained that that it must’ve all been setup—she must’ve orchestrated the diagnosis with the help of those doctors.
Frustrated but determined to be taken seriously, in 2018 she also visited a leading doctor in the USA who confirmed the problems with her neck - unstable C1-C6 discs that had worsened due to the lack of medical attention.
Finally, after years of fighting, and after getting a new GP, Rosie's condition was accepted by BC's health care system.
But by this time much damage had been done after nearly a decade of neglect.
A port had to be placed in her chest for fluids; she's on 11 medications, including heavy painkillers; and her current doctor admits that she's been treated 'very unfairly' and continues to try to help with palliative care.
But she's been left to clean up a mess, and is still unable to get treatment for the most unbearable symptom - the pain in her neck.
For years, the medical system rolled its eyes in mistrust and showed its misunderstanding of
EDS, and damage was. It's Rosie who suffered the consequences.
REFUSING TO LET THEM WIN
Today Rosie continues to fight, but it’s become more difficult as her condition worsens.
She spends nearly all hours of the day bedridden - her pain is much worse when upright - with throbbing headaches.
Repairing the damage to her teeth has been costly and she now must use removable partial dentures.
And she requires a fusion for the unstable discs in her neck, which cause her excruciating pain and have forced her to use a wheelchair to get around.
The physical and emotional trauma she's experienced have led her to consider MAID –medical assistance in dying—which makes it easier for many Canadians to kill themselves than to get the help they need.
But for Rosie MAID would be a victory for the health care system letting her down.
She’s determined not to give in, and is fundraising for stem cell therapy that would improve her condition, but each day it’s getting harder.
MAID would be a victory for the health care system letting her down
And it’s made all the more difficult living in a country regarded as an exemplar of high quality public health care.
As she puts it, “people need to know that healthcare in Canada isn’t some kind of Holy Grail when you’ve got a rare disease”.
Spencer van Vloten is the editor of BC Disability. To get in touch, send an email to email@example.com!