- Daisy Simpson, 34, says her brain condition has been overlooked due to a previous diagnosis of psychosis.
- Simpson says she believes stigma prevents her from accessing specialist care for her Moyamoya disease.
- Mental illness overshadowing a physical diagnosis is a recognized bias in medical care.
A woman with a rare brain condition has said her condition has been overlooked by doctors who believe her mental health is to blame.
Daisy Simpson, 34, believes her doctors failed to spot what was wrong when she was admitted to a London hospital in January 2021.
She has since been diagnosed with Moyamoya disease, a rare brain disease that affects fewer than 1 in 100,000 people. According to Simpson and her doctors, she regularly suffers from debilitating “mini-strokes”.
“Since my stroke, I have deformities on my left side. I can’t lift my shoulder and I have limited movement on my left side. My body doesn’t move the same way. I’ve been in a wheelchair for almost two years old. My vision has deteriorated dramatically. I can’t concentrate. My life has completely changed,” Simpson said.
She says she suffered a case of “diagnostic eclipse”, a bias in the medical community that doctors dismiss rare symptoms as the product of a previous mental health condition.
Hospital officials initially dismissed a complaint from Simpson about his care, but said they would reconsider his case after being contacted by Insider.
“Marked from the start”
On Jan. 22, 2021, Simpson says she “suddenly” lost all movement on her left side.
“I knew immediately I had a stroke. I couldn’t move my arm, I couldn’t move my leg, my speech was all jumbled up,” she said.
Simpson was admitted to an east London hospital. Early in her treatment, Simpson said she was told her CT scans showed signs of subarachnoid hemorrhage – brain bleeding – and a stroke, she said.
But later, to his surprise, Simpson said he was told otherwise. The team had reviewed his scans and decided that his symptoms were not caused by a stroke.
“I could tell by the staff’s behavior towards me that they thought I was crazy,” Simpson said.
Simpson would later ask a neurologist who was not affiliated with the hospital to review her scans, who told her she had had a small stroke and brain bleed, according to a letter seen by Insider.
However, she said the earlier notice had caused a substantial delay in her diagnosis of Moyamoya, adding: “Wherever I went it followed me first. I was tainted from the start.”
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 team. of neurology.
The diagnostic summary said experts at the hospital had ‘conflicting opinions’, but decided his symptoms were caused by a ‘functional’ component – the medical jargon sometimes used to attribute unexplained symptoms to psychological causes.
The team was aware of Simpson’s diagnosis of mental illness, which was listed as a pre-existing condition.
Simpson filed a formal complaint regarding his care. In their response, seen by Insider, hospital management said they had reviewed her case and “did not identify any deficiencies.”
He alleged that Simpson was rude and uncooperative in the hospital and that she decided to be discharged early, against the hospital’s advice, which Simpson denies.
A senior official responded to Insider saying she would personally review Simpson’s case.
Mamta Shetty Vaidya, chief medical officer of the NHS trust at Barking, Havering and Redbridge University Hospitals, described Simpson’s account as “heartbreaking”.
The vast majority of diagnoses are correct and helpful. But doctors are not infallible.
When faced with a series of uncommon symptoms, medical professionals may tend to look for the simplest explanation.
If the patient has already been diagnosed with a mental illness, the physical symptoms may be wrongly overlooked – a medical bias called diagnostic concealment.
Research shows bias can have real-life consequences: Patients with mental illness are more likely to die earlier and have more comorbidities like diabetes and heart disease than those who don’t.
Although some of these discrepancies may be related to the patient’s poor mental health, experts have suggested that diagnostic eclipse is likely a contributing factor.
For rare disease patients, this can be a double-edged sword. Rare symptoms can lead to a misdiagnosis of mental illness. This, in turn, can lengthen the time for their much-needed diagnosis by 2.4-14 times, a 2014 survey of 12,000 patients found.
Simpson thinks her symptoms have been dismissed as sanity
Simpson said the hospital admission was not the first time she had faced disbelief from medical professionals.
Since she was a child growing up in Essex in the UK, she had faced a host of medical issues including respiratory and metabolic issues. None of these are presented in the typical way, she said.
By the time she was 20, “I had probably had about 20 ICU admissions” and hundreds of hospital admissions for her physical health, she said.
Simpson said she was diagnosed with a psychotic disorder at age 18. She now believes her mental health symptoms may have been partly caused by the medications she was taking for her physical symptoms.
From then on, she said, “every time I presented my complex health needs, they were dismissed as mental health issues.”
Simpson believes she began noticing the first symptoms of her Moyamoya disease in 2020. She had difficulty walking, coordination issues and noticed changes in her behavior, she said.
But, she said, she couldn’t convince a doctor that it wasn’t all in her head.
“I was like, look, there’s really something wrong with me. I’ve never felt so bad in my entire life,” she said.
“No one would listen,” she said.
Simpson said she contacted eleven experts before getting the diagnosis – all but three of whom mentioned her mental health and were often dismissive, she said.
Two of these experts finally told her that she had Moyamoya disease.
Moyamoya disease is caused by a narrowing of blood vessels in the brain. People like Simpson can suffer strokes and mini-strokes several times a month, which can cause seizures, weakness, numbness or paralysis on one side of the body, cognitive delays and difficulty speaking, by the Mayo Clinic website.
It affects a relatively small proportion of patients, approximately 1 in 100,000 among East Asian populations and about 1 in a million in the United States. For this reason, doctors tend not to research it, Risheng Xu, a stroke neurosurgeon at Johns Hopkins Hospital, told Insider.
“It’s certainly possible for providers unfamiliar with the disorder not to think of it as one of the possibilities a patient has,” Xu said.
Xu has not seen Simpson’s file.
However, he noted that in general, the fact that a disease is rare is no excuse for ignoring a patient’s symptoms.
“Just because an imaging study, diagnostic study, or lab test is normal doesn’t mean we should discount patient complaints,” he said.
“Can you imagine what it does to a patient who is suffering a lot from these horrible symptoms, instead of being taken seriously by the medical community, to be told, ‘you’re crazy?’ is amazing,” he said.
Still struggling to access care
Despite being diagnosed with Moyamoya disease, Simpson says she still struggles to access support.
“In my head, I thought as soon as I got confirmation that I had a stroke, the support would come,” she said.
“Now, almost two years later, I still have nothing,” she said. “I couldn’t get the necessary equipment, physio, speech and language,” she said.
Simpsons says she feels increasingly physically disabled and it has taken its toll. “I couldn’t maintain my groups of friends. I couldn’t work. I lost my independence and have to have 24/7 care,” she says.
“I believe I will die because of my mismanagement, regardless of Moyamoya,” she said.
“And nothing is being done to reduce that.”