Woman with a rare brain disease says doctors repeatedly dismissed her condition, blaming it on mental illness
- Daisy Simpson, 34, says her brain disease was overlooked due to an earlier psychosis diagnosis.
- Simpson says she believes the stigma stops her accessing specialized care for her Moyamoya disease.
A woman with a rare brain disease said her condition was overlooked by doctors who were convinced her mental health was to blame.
Daisy Simpson, 34, believes her doctors failed to spot what was wrong when she was admitted to a hospital in London in January 2021.
She has since been diagnosed with Moyamoya disease, a rare brain condition that affects fewer than 1 in 100,000 people. Per Simpson and her doctors, she routinely suffers debilitating "mini-strokes."
"Since my stroke, I have been left with left-sided defects. I can't raise my shoulder and I have limited movement on my left side. My body doesn't move the same. I have been in a wheelchair almost two years. My vision has drastically got worse. I can't focus. My life has completely changed," Simpson said.
She says she was the victim of a case of "diagnostic overshadowing," a bias in the medical community whereby doctors dismiss uncommon symptoms as the product of a prior mental health condition.
Hospital officials initially rejected a complaint from Simpson about her care, but said they would review her case again after being contacted by Insider.
'Tainted from the outset'
On January 22, 2021, Simpson says she "suddenly" lost all movement on her left side.
"I immediately knew I was having a stroke. I couldn't move my arm, I couldn't move my leg, my speech was all garbled," she said.
Simpson was admitted to a hospital in east London. Early on in her care, Simpson said she was told her scans showed signs of a subarachnoid hemorrhage — a brain bleed — and a stroke, she said.
But later on, to her surprise, Simpson said she was told the opposite. The team had reviewed her scans and decided her symptoms had not been caused by a stroke.
"I could tell by staff's behavior towards me that they thought I was mad," Simpson said.
Simpson would later ask a neurologist who wasn't affiliated with the hospital to review her scans, who told her she had had a small stroke and a brain bleed, according to a letter seen by Insider.
However, she said the earlier opinion caused a substantial delay in her Moyamoya diagnosis, adding: "everywhere I went, it followed me first. I was tainted from the outset."
According to Simpson's discharge summary, seen by Insider, signs of a possible stroke and brain bleed were indeed spotted by hospital staff but were dismissed after review by a stroke expert and a neurology team.
The diagnosis summary said the hospital's experts had "conflicting opinions" but decided that her symptoms were caused by a "functional" component — medical jargon sometimes used to assign unexplained symptoms to psychological causes.
The team was aware of Simpson's mental-illness diagnosis, which was listed as a pre-existing condition.
Simpson filed an official complaint about her care. In its response, seen by Insider, hospital management said it reviewed her case and "did not identify any failings."
It alleged that Simpson was rude and uncooperative in the hospital and that she decided to discharge early, against the hospital's advice, which Simpson denies.
A senior official responded to Insider saying she would personally review Simpson's file.
Mamta Shetty Vaidya, the chief medical officer of the Barking, Havering and Redbridge University Hospitals NHS trust, described Simpson's account as "upsetting."
The vast majority of diagnoses are correct and useful. But doctors are not infallible.
Faced with a series of uncommon symptoms, medical professionals may tend to look for the easiest explanation.
If the patient has had a previous mental illness diagnosis, physical symptoms can be mistakenly overlooked — a medical bias called diagnostic overshadowing.
Research shows that the bias can have real-life consequences: patients with mental illness are more likely to die earlier and have more co-morbidities like diabetes and heart disease than those who don't.
Though some of these discrepancies can be linked to the patient's mental ill health, experts have suggested diagnostic overshadowing is likely a contributing factor.
For patients with rare diseases, this can be a double-edged sword. The uncommon symptoms can lead to a misdiagnosis of mental illness. That, in turn, can lengthen the time to their much-needed diagnosis by 2.4 to 14-fold, a 2014 survey of 12,000 patients found.
Simpson believes her symptoms were dismissed as mental health
Simpson said the hospital admission wasn't the first time had been faced with disbelief from medical professionals.
Since she was a child growing up in Essex in the UK, she had dealt with a host of medical conditions, including respiratory and metabolic issues. None of these presented in a typical way, she said.
By her 20s, "I'd had probably about 20 intensive care admissions" and hundreds of hospital admissions for her physical health, she said.
Simpson said she was diagnosed with a psychotic disorder at 18. She now thinks her mental-health symptoms could have partly been caused by the medication she was taking for her physical symptoms.
From then on, she said, "anytime I presented with my complex health needs, they were dismissed as mental health."
Simpson thinks she started noticing early symptoms of her Moyamoya disease in 2020. She had difficulties walking, issues with coordination, and noted changes in her behavior, she said.
But, she said, she couldn't convince a physician that it wasn't all in her head.
"I was saying: Look, there's something really up with me. I have never felt this unwell in all my life," she said.
"Nobody would listen," she said.
Simpson said she approached eleven experts before she got this diagnosis — all but three of whom mentioned her mental health and were often dismissive, she said.
Two of those experts finally told her she had Moyamoya disease.
Moyamoya disease is caused by a narrowing of blood vessels in the brain. People like Simpson can experience strokes and mini-strokes several times a month, which in turn can cause seizures, weakness, numbness, or paralysis on one side of the body, cognitive delays, and difficulties speaking, per the Mayo clinic website.
It affects a relatively small proportion of patients, about 1 in 100,000 among East Asian populations and about 1 in a million in the US. For that reason, doctors don't tend to look for it, Risheng Xu, a cerebral vascular neurosurgeon at the Johns Hopkins Hospital, told Insider.
"It is certainly possible for providers who may be unfamiliar with the disorder to not think about it as one of the possibilities that a patient has," Xu said.
Xu did not see Simpson's file.
However, he noted that, in general, that a condition is rare is no excuse for dismissing a patient's symptoms.
"Just because an imaging study, a diagnostic study, or a laboratory test is normal, that doesn't mean that we should brush off the patient's complaints," he said.
"Can you imagine what that feels like to a patient who's very much experiencing these horrible symptoms, instead of being taken seriously by the medical community, to be told: 'you're crazy'? I mean, that's unbelievable," he said.
Still struggling to access care
In spite of her Moyamoya disease diagnosis, Simpson says she's still struggling to access support.
"In my head, I thought as soon as I've had it confirmed I've had a stroke, the support will come," She said.
"Now nearly two years on, I still have nothing," she said. "I haven't been able to get the equipment needed, physio, speech and language," she said.
Simpsons says she's feeling more and more physically disabled and it has taken its toll. "I haven't been able to maintain my friendship groups. I haven't been able to work. I have lost my independence and have to have 24/7 care," she says.
"I do believe I'm gonna die due to the mismanagement of me, regardless of the Moyamoya," she said.
"And nothing is being done to reduce that."
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