Hi,

I have set this page up to help my dear friend who has been diagnosed with a rare disease. After numerous tests doctors have informed her that she will require brain surgery to get her life back. Unfortunately the surgery in question is not available in her country of residence and only available in the United States. Below is her story in her own words.

Most people will never understand what it’s like to stare down the barrel of a complex medical diagnosis.

That’s not to say they will never get sick. They will. And it might be terrible. But most of the time, it will at least be easy to comprehend. The implications will be clear. The treatment options will be explained and the doctor will be knowledgeable. They will know what to do next.

But for the unlucky few who suffer from a rare disease, like I do, there are no certainties. There is little understanding. There is pain, confusion and despair. Hope is simply not a part of the equation. And that’s a big problem, because there is always hope. My story started summer 2017 and since then i have been through hell but now i know whats wrong with me.

Almost a year with vertigo, unsteady balance, heartbeat, nausea, brainfog, constant vomiting and fatigue I was diagnosed with SSCD- Superior Semicircular Canal Disease.

Countless doctor visits, tests and multiple diagnosis, I am back to square one. At this point I have exhausted all of my options and my only chance of getting help is seeing Dr. Gerard Gianoli at the Ear and Balance Institute in Covington, Louisiana. My case is beyond Norwegian expertise.

I will need brain surgery called middle fossa craniotomy, where the brain is lifted by a neurosurgeon to give the otolaryngologist access to plug the hole above my superior canal when they cut my head open.

I want my old life back, not only exist lying on the bed looking outside the window listening to people walk outside laughing even though it’s their full right to do so it breaks my heart. I want to do the same but instead i feel like a prisoner in my own body. I am suffering everyday and slowly losing the will to keep going.

Please take a look at both videos from the Dr’s TV show to get an insight of my diagnosis.

https://youtu.be/Ebn9J_GZ0AU

https://youtu.be/axXpDmujXYQ

Supposedly asking for help reveals strength, not weakness but that’s not how I feel writing this. I was suppose to do this months ago when I had an inkling that my rare condition would be beyond Norwegian medical experience and knowledge but I wanted to give them a chance. I didn’t want to ask for help until I knew that I absolutely had to.

As a result, I’ve wasted so much time of my life waiting and hoping. And as much as this post reveals a very personal part of my life I am not comfortable sharing, at this point I feel like I have no choice. My condition is progressing and if I don’t do something about it now, I will lose the ability to care for myself. Please help me get to Dr. Gionali. I am literally begging for help and time is running out.

Your donation is greatly appreciated and means the world to me. Thank you ♡