Woman with debilitating disease: 'I don't want to die'
A GLADSTONE woman will travel 13,000km across the north Pacific Ocean early next year to undergo a dangerous and controversial procedure she hopes will save her life.
Cathy Marais was diagnosed with multiple sclerosis in January but has been accepted for Autologous Hematopoietic Stem Cell Transplant treatment in Puebla, Mexico on March 28.
Mrs Marais must travel overseas for the treatment as she does not fit the requirements to have the procedure done in Australia, and if she did she would be waiting years at the bottom of a waitlist.
Fewer than 40 have fit these requirements.
"I know the risks with the procedure, and I'm beyond scared ... but I know what's going to happen to me if I don't try."
"I don't want to fall into that percentage, I don't want to die."
It is a highly dangerous treatment, with a mortality rate of about two people in every 100 treated for MS within 100 days after treatment.
MS Australia CEO Debra Cerasa said the procedure is still in it's early stages, and it is too early to tell whether it is safe.
"It is an intrusive procedure with many high-risk steps and includes high doses of chemotherapy which can knock people around considerably," she said.
"Currently, there is no significant evidence to determine if the treatment is safe, or that identifies which people actually benefit from this treatment - as results are varied."
Mrs Marais said the last thing she wanted to do was travel overseas, but said she was 'all out of options.'
"I would do anything to have the treatment done in Australia, but even getting accepted overseas was like winning the lottery" she said.
"I tried everything, but it was impossible to be accepted here."
There have been cases of people undergoing the treatment and have seen no benefit.
Cathy has been following the success stories and said it's what keeps her going.
"I see these people who have MS and are living life almost normally because of the treatment," she said.
"I want that life, for me, for my husband and my kids.
Not a day goes past when Cathy wonders if the treatment is going be sucessful, and if it is, what her life is going be like after.
"I will never be who I was, not after the pain and everything I have been though," she said.
"But if there's a chance, a glimpse I could get through this, I have to take it."
The treatment is not cheap, as well as medicines and visits to speciality doctors, the Marais family will be struggling for a long time after the treatment.
You can donate to Cathy's cause at mycause.com.au/page/104233/my-fight-to-beat-ms
WHAT IS MULTIPLE SLCEROSIS
MULTIPLE sclerosis is a disease of the central nervous system - it may affect the brain, spinal cord and or optic nerve.
The current hypothesis is that the disease appears in those individuals who have a genetic tendency to react to some infectious agent in the environment such as a virus or bacterium.
This means that the disease is not genetically transmitted in the same way as hair or eye colour, for example.
There seems to be a combination of genes that makes one person more susceptible to the agent(s) than someone else with a different genetic makeup.
AHSCT has been proposed as a treatment for severe autoimmune diseases, including MS.
The aim is to re-boot the immune system using the patient's own stem cells so that the self-reactive immune cells that are attacking an individual's body are removed.
The procedure is carried out by:
- Collecting or 'harvesting' the stem cells from the bone marrow or blood of the patient
- Purifying and concentrating the cells in the laboratory
- Freezing or 'cryopreserving' the cells in the laboratory until they are required
- Administering chemotherapy to destroy the patient's immune system (conditioning)
- Returning the thawed AHSCs to the patient by infusion