Hannah's Story the Journey with MS

The 'invisible' disease has many symptoms effecting the body harshly with both physical and cognitive symptoms in the brain and throughout the entire body that are invisible to the naked eye. The diagnosis for such a disease comes usually from a MRI scan or if needed a Lumbar Puncture. In Hannah's case the Lumbar Puncture was not needed as it was prominently and acutely clear with Magnetic resonance imaging (MRI) scan.

This diagnosis was not a shock to someone who had been suffering from increased symptoms as it was consistent with what was already suspected (A serious illness) Hannah is now coming to terms with the prognosis of palliative care for the hope of slowing future lesions in the spine and brain and future symptoms. As this is an incurable disease with no repair treatment available to the damage already done throughout. Hannah has lost most of the function of her left hand and arm and slightly reduced movement of the right at this point with pain and discomfort that does not subside. MS and progression of the disease is different for everyone as Hannah has one of the most severe cases in the country she has been granted treatment for Tysabri for the progression.

With MS there are a lot of doctors and prescription costs, hospital fee's, transport and parking. Hannah currently receives $3.00 a week to cover this from the New Zealand Government. These are all extremely frequent weekly and monthly costs so not all prescriptions for pain etc are able to be filled. Hannah lost her job months prior to her diagnosis when she asked for leniency while managing her symptoms of the unknown as her job performance suffered extremely under new management, she had asked for unpaid leave or to be moved under the guidance of a manager who would allow her to use the bathroom frequently and stop work when feeling chest pains and shortness of breath just while it was sorted and if the problem couldn't be solved she was prepared to hand in a resignation but was declined and given an ultimatum days after a diagnosis of a serious illness for a family member and her nana passing away. With unknown fatique, pains and depression strain on her own health and her mother's cardiomyopathy (heart condition usually magnified from stress)

at the time Hannah could not see any option to physically be capable to carry on through a workday under conditions stipulated to her despite being so close to a diagnosis and being covered with medical insurance from her employer. She was told she did the right thing and ''good girl'' when she upsettingly handed in her resignation, there is a lot more to the story but Hannah wishes it to remain amicable.

She has been denied additional help from the Government after been unpaid and incorrectly unpaid now for over a year. She has been denied access to her Kiwisaver (Government Investment Retirement Scheme) under the grounds of 'cannot prove the disease will be eminently terminal'. Hannah's symptoms have become increasingly worse over time and has optic neuritis(temporary blindness) as a secondary symptom of her MS and the is no reversibility or cure, yes death is a small risk but not significant, she believes she is entitled to her own funds to pay for expensive medical treatment and associated costs as a disease isn't cheap. At the moment she is in significant debt and relying on her superannuation parents to drive her all over Auckland for her appointments which is costly also. At this point Hannah has had enough, we would like to gather and ask for support as Hannah faces the next step in her journey with progression, treatment, financial woes, and government battles with an advocate and hopefully when have made contact the voice of her local MP. All she is asking for is compassion and help to access her own rights.

I believe no New Zealander should have to face these struggles of getting Work and Income or their Kiwisaver while they face tons of 1000s of dollars of unnecessary debt and added agony.

Please also like our page to support Hannah as well as stand for all of our rights through the Facebook link. :) xx