Grace has been diagnosed with a serious and extremely painful brain disorder, IIH. The cause is as unknown as is a cure.
Auckland
Idiopathic Intercranial Hypertension, is a neurological disorder that mimics a brain tumor. The cause is unknown, but an intracranial fluid build up increases the pressure around the brain, which in turn causes constant severe headaches, pressure on the optic nerves affecting vision, loss of co-ordination, inability to sleep, constant restlessness, sound sensitivity and many other symptoms. All making it impossible for Grace to live her normal life and be her beautiful self.
There are very few options for treatment. What the Neurosurgeon and Specialists have tried so far has not worked and the side effects have been horrendous. As I write this, she is waiting for another lumbar puncture to give her some temporary relief (7 1/2 hours in admissions so far).
Surgery is another option, but is far from a cure, just temporary relief by using stents and has it's own set of complications.
The primary goal in treatment of IIH is the prevention of visual loss and blindness, as well as symptom control by reducing the pressure. It may go into spontaneous remission (although it can still relapse at a later stage), or may continue chronically.
Grace, a young teacher, has already been through so much in the past 3 years since a Braca diagnosis and subsequent Bilateral Mastectomy only 12 months ago.
Grace's mum, Leigh (who has survived Breast Cancer and all the treatment) is determined to prevent more sinister outcomes with this condition and is desperate to get her into remission the most natural way possible, starting an Holistic approach this week.
Grace needs constant care which her partner Andrew, mother Leigh and people close to her have been providing the last three months. Not an easy task, watching someone you love suffer so much. Grace is unable to work, drive, interact with people and is finding this extremely difficult to live with. On top of this, Grace and her partner Andy have recently purchased their first home with a mortgage that requires two incomes.
I have known Grace since she was born; a long time friend of her mothers. Watching their world being turned upside down by this condition is heart breaking.
Grace is a beautiful, kind and loving young woman who has been through so much, and still comes out smiling.
She has helped and supported many others who have needed it, and now unfortunately she is the one who can do with a big helping hand.
All of you who know Grace will understand the impact this condition is having on her life and her family; and while they are rich in most things, financially this is a real struggle.
Grace needs help in the form of funds to help cover the costs of professional treatments and medications required to provide relief and hopefully remission and to not have worry about the lack of income while she is unable to go about her normal working life..
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