A woman with an extremely rare brain disease said she has been “stuck” in one room for more than 24 months.
Daisy Simpsons, has an extremely rare case of Moyamoya disease which causes the arteries of the brain to close up.
The 34-year-old was first diagnosed with the condition in June 2021 after she suffered a stroke and brain bleed in January 2021.
Daisy, from Essex, visited six different doctors and multiple neurologists to get herself diagnosed after struggling with her symptoms, reports EssexLive.
The disease, impacting one in a million people, causes Daisy to experience multiple transient ischemic attacks (TIAs) every month.
She was also experiences reduced vision, uncontrolled body movements, memory issues and difficulties walking.
Her condition is deteriorating and now she completely relies on carers to live.
The only way to prevent her disease and save her life is to perform surgery on her brain, although this is not a guaranteed fix.
Daisy said: "The strokes are caused by starvation of oxygen to the brain. It's been very sudden really, I had no neurological issues before summer 2020.
"I had breathing issues; I would often get sick but I would always get better.
"Now they think the operation is a 50/50 chance on the table. They don't know how beneficial it will be.”
Since March this year, Daisy has been under the care of Mid and South Essex integrated Care system.
However, whilst being under their care she has made two complaints, claiming the fault she lives in is not suitable to her needs.
Daisy said: "I would like my care to be as supportive as possible. If there were two things the services could do, it would be a bed and a wheelchair; we can do practical things like a bed and wheelchair.
"I just feel upset because so much of this is not my fault, it's just been rough.”
Daisy has also been facing issues with her wheelchair, which is unable to fit through several doorways.
The 34-year-old said: "The care situation is awful; they can't get the wheelchair in and out of the door so I've been stuck in the same room for 24 months.
"Everything is made harder by the fact that I am in an environment that's not suited for care.
"I've been stuck in the same room with deteriorating health and all I do is go to hospital appointments. But to physically get out of the flats is almost impossible."
Daisy also said she worries she could die prematurely due to lack of suitable care.
She believes she is being put at unnecessary risk despite her “begging” for help.
The Mid and South Essex Integrated Care Partnership spokesman said it did not comment on individual cases.
However, it confirmed it had received her complaints and would respond directly to her.
Daisy’s friends have launched a GoFundMe page to raise money for her ongoing care.
