Asha’s road trip to good health

Where to begin...
For those of you who don’t already know, I recently passed the 10th anniversary of my first diagnosis and it was not cause for celebration. Just after my 16th birthday I was diagnosed with the first of three life threatening, incurable, auto immune disorders.


ITP (Idiopathic Thrombocytopenic Purpura) was my first diagnosis and this is where your immune system attacks your platelets. My platelets dropped to 20 and it was initially thought that I had leukaemia. This was ruled out after a bone marrow biopsy and with no cure for ITP I was monitored closely for the following few years.
At the age of 19 ITP magically changed into what I live with now PNH (Paroxysmal Nocturnal Hemoglobinuria). Now my immune system was attacking my red blood cells. About 200 people in Australia have this condition. For many years I suffered from chronic fatigue, body aches, and dizziness, with a haemoglobin count that is often half that of a healthy person.
The treatment I receive, Soliris, is not a cure and I have been receiving it mostly fortnightly, at our local Cancer Center, for the last 7 years.
Six months after starting this treatment I developed my third and final condition that being MDS (Myelodysplasia). This is a bone marrow disorder and means none of my cell lines are being produced correctly.
I am now technically considered pre-leukaemic and my specialists expect me to develop AML (Acute Myeloid Leukaemia) specifically.


During the last decade we have followed the advice of conventional medicine to a tee and I’m worse off now than when we began. Because it is very difficult living your life in health limbo, unable to pursue a career, start a family or travel overseas, we have resolved to focus our attentions on alternative treatments, as living this way in the long term is just not sustainable.


After trying out a few locally, alongside dietary and life style changes I began to notice small improvements in both my blood results and mindset, along with an improvement in symptoms. A step in the right direction. Recently I have been offered compassionate access to an alternative medical treatment in NSW and I’m super keen to pursue this opportunity. However, it comes after the past decade has depleted myself and those closest to me of financial resources and emotional strength. It has just been my mother and I dealing with this and after such a long and uphill battle we are reluctantly asking for help, something neither of us are particularly good at.

What I need to pursue this alternative treatment in NSW is a van that I can live in for a time. I need to safely get myself down there and accommodate myself whilst there. So a van would facilitate both of those needs.
I have some savings, but if I wait till I have saved what I need, I may never get there.

I would be sincerely grateful for any support you might be able to provide but ask that if you, like us, are coping with a loved one who is seriously ill, please save your funds.
With much gratitude and love
Asha