Raise money for private care

Hi I’m Emily and back in 2021 I was diagnosed with Idiopathic Intercrainal Hypertension (I’ll go into more details about this later on)

The NHS hasn’t been able to help me and despite dozens of hospital stays and lumbar puncture's (pictured), as well as various prescriptions. Im still in the same position, I’m seeking private doctor care to finally be able to live a reasonable life, unfortunately I’ve lost a few jobs due to long term sickness and struggle on a daily basis with pain.

any help toward my goal of achieving the funds for private care would be more than appreciated.

About the condition

idiopathic intercrainal hypertension is a neurological condition that causes high pressure in the brain from too much cerebrospinal fluid (CSF). It can mimic a brain tumour, And over time can cause blindness in some cases.

For me the main issue with my condition is they can only really see effects of pressures through 3D eye scans etc as they have to see papilledema (swelling of the eyes).

I’m on tablets to stop me from going blind and reduce papilledema they’ve not been able to see my pressure.

In December I came off them, As you aren’t supposed to be on them for more than 6 months (I’ve been on them two years)

So last month I started losing my vision, vomiting everything I eat and drink and had severe neck and head pain which is what happens when the fluid is high.

Obviously there’s a lot more to it but that’s the basics.

The condition is rare, mainly in middle age woman who are very overweight, so I’m just extremely unlucky,

There is no direct cure and they won’t do anything to help me apart from migraine medication which only touches the surface.

You can get a shunt that adjusts pressure but they’re refusing to do that probably due to costs.

Meanwhile in between my flare ups I live with fatigue, constant head aches, frequent migraine and nausea, brain fog etc

But as it’s rare the government don’t recognise it as a disability (which it is) so I can’t go on benefits, but due to the symptoms working is hard.

Before

before this condition affected me I was working as a prison officer whilst doing a part time degree, with a promising career ahead of me.

due to my faints and other symptoms I had to leave the career as it wasn’t safe for me anymore.

I’ve lost all of my early 20’s to this illness and most of my savings keeping myself afloat.

Ive taken place in medical trails in hope for a break through in this condition (pictured)

for more information please visit https://www.iih.org.uk/