To Russia - Fighting MS!
Donation protected
Amanda is trying to get to Russia for an intense and expensive treatment that has the possibility to stop her Multiple Sclerosis (which has no cure, this treatment may not reverse current damage but can stop further progression of the disease).
Amanda is only 33 and a mother of a 3 year old but is already fearful of what her future holds with MS. This treatment could halt her MS and mean the possibility of permanent disability would be gone. Amanda doesn't want her little girl, in years to come, having to be her carer if she can't walk, drive, has bladder/bowel issues etc.
Amanda explains what has been happening and how she feels below.
"I was 31 and holding my baby daughter when my most serious symptoms so far first started to emerge. For 7 months from my chest down to my feet was either numb, painful or had pins and needles (like dead leg over the majority of your body 24/7). I have blinding headaches and migraines all day, every day, that most pain killers cannot dull. I average 3-4 hours of broken sleep a night even if I take powerful sleeping tablets. I've had optical neuritis where my eye hurt constantly and my vision was blurred for weeks. I am so fatigued all the time that caring for my three year old daughter and working part-time is now a huge challenge, I get so tired".
GPs and specialists at first had no clue. The disease was invisible when you looked at her but inside Amanda's body the amount of inflammation in her spinal cord was increasing. After an MRI it became obvious there was a serious problem and her neurologist couldn't understand why she wasn't already paralysed.
"My name is Amanda and I am an Australian woman from Melbourne. I have Multiple Sclerosis (MS). This illness is the scariest and most confusing thing I've ever had to deal with and I don't want it to get worse. I have one chance to stop it, to halt the symptoms but the stem cell treatment isn't available for sufferers like me yet in Australia.
With the help of supportive family, friends and generous strangers, I hope to fundraise my way to treatment in Russia next February".
This cutting-edge medical breakthrough in MS gives Amanda hope that she could live her life without a constant shadow and that her daughter won't be forced to grow up and care for a heavily disabled mother.
"It is called Hematopoietic Stem Cell Transplant (HSCT). My own stem cells will be harvested before I am given high dose chemotherapy to almost destroy my immune system in the hope my body forgets that it has MS. My conditioned, healthy stem cells will then be given back to me to help rebuild my immune system slowly and hopefully halting my MS. It will take me up to 2 years to recover from the procedure".
The last 18 months especially has been such a battle but if you have never had nerve pain it's hard to appreciate how completely agonising and life consuming it can be.
Amanda feels that this treatment is worth travelling to the other side of the world, spending up to 40 days in hospital away from her daughter and her body being put through an intense therapy that has a long and hard recovery, because if she doesn't try the outcome could be even harder.
"I want to give myself the best chance not to have MS constantly hanging over me and the fear of being permanently disabled to go away. I need to at least try because my only other option is to slow progression, not stop it, that isn't good enough".
MS is hard to deal with because to everyone else you may look perfectly fine, but inside your body is turning on itself.
"I will get to Russia and I will fight this! I will show my daughter and everyone else that no matter what life throws at you, you just keep going and fight like mad!"
Thank you for reading Amanda's story and we hope that you can help us make Amanda's hope a reality.
The To Russia - Fighting MS Team.
Lauren, Julia, Kathryn, Jan (Amanda's mum)
Xxxx
Oh...one more thing too - Amanda has registered with Consumer Affairs as a Fundraiser so that anyone who doesn't know her can feel at ease that it is a legitimate cause. The donation money will certainly go towards her treatment, travel to Russia and recovery and if she manages to raise the goal amount and doesn't use it all she will donate it to either fellow sufferers fundraising to go to Russia or to MS Australia.
References and for more information:
http://www.medicalnewstoday.com/articles/137238.php
http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transplantation
Another great resource is a blog by George Goss who has been through this treatment and includes some great information
http://themscure.blogspot.com.au/2010/06/stem-cell-transplantation-reference.html
http://en.wikipedia.org/wiki/Multiple_sclerosis
Amanda is only 33 and a mother of a 3 year old but is already fearful of what her future holds with MS. This treatment could halt her MS and mean the possibility of permanent disability would be gone. Amanda doesn't want her little girl, in years to come, having to be her carer if she can't walk, drive, has bladder/bowel issues etc.
Amanda explains what has been happening and how she feels below.
"I was 31 and holding my baby daughter when my most serious symptoms so far first started to emerge. For 7 months from my chest down to my feet was either numb, painful or had pins and needles (like dead leg over the majority of your body 24/7). I have blinding headaches and migraines all day, every day, that most pain killers cannot dull. I average 3-4 hours of broken sleep a night even if I take powerful sleeping tablets. I've had optical neuritis where my eye hurt constantly and my vision was blurred for weeks. I am so fatigued all the time that caring for my three year old daughter and working part-time is now a huge challenge, I get so tired".
GPs and specialists at first had no clue. The disease was invisible when you looked at her but inside Amanda's body the amount of inflammation in her spinal cord was increasing. After an MRI it became obvious there was a serious problem and her neurologist couldn't understand why she wasn't already paralysed.
"My name is Amanda and I am an Australian woman from Melbourne. I have Multiple Sclerosis (MS). This illness is the scariest and most confusing thing I've ever had to deal with and I don't want it to get worse. I have one chance to stop it, to halt the symptoms but the stem cell treatment isn't available for sufferers like me yet in Australia.
With the help of supportive family, friends and generous strangers, I hope to fundraise my way to treatment in Russia next February".
This cutting-edge medical breakthrough in MS gives Amanda hope that she could live her life without a constant shadow and that her daughter won't be forced to grow up and care for a heavily disabled mother.
"It is called Hematopoietic Stem Cell Transplant (HSCT). My own stem cells will be harvested before I am given high dose chemotherapy to almost destroy my immune system in the hope my body forgets that it has MS. My conditioned, healthy stem cells will then be given back to me to help rebuild my immune system slowly and hopefully halting my MS. It will take me up to 2 years to recover from the procedure".
The last 18 months especially has been such a battle but if you have never had nerve pain it's hard to appreciate how completely agonising and life consuming it can be.
Amanda feels that this treatment is worth travelling to the other side of the world, spending up to 40 days in hospital away from her daughter and her body being put through an intense therapy that has a long and hard recovery, because if she doesn't try the outcome could be even harder.
"I want to give myself the best chance not to have MS constantly hanging over me and the fear of being permanently disabled to go away. I need to at least try because my only other option is to slow progression, not stop it, that isn't good enough".
MS is hard to deal with because to everyone else you may look perfectly fine, but inside your body is turning on itself.
"I will get to Russia and I will fight this! I will show my daughter and everyone else that no matter what life throws at you, you just keep going and fight like mad!"
Thank you for reading Amanda's story and we hope that you can help us make Amanda's hope a reality.
The To Russia - Fighting MS Team.
Lauren, Julia, Kathryn, Jan (Amanda's mum)
Xxxx
Oh...one more thing too - Amanda has registered with Consumer Affairs as a Fundraiser so that anyone who doesn't know her can feel at ease that it is a legitimate cause. The donation money will certainly go towards her treatment, travel to Russia and recovery and if she manages to raise the goal amount and doesn't use it all she will donate it to either fellow sufferers fundraising to go to Russia or to MS Australia.
References and for more information:
http://www.medicalnewstoday.com/articles/137238.php
http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transplantation
Another great resource is a blog by George Goss who has been through this treatment and includes some great information
http://themscure.blogspot.com.au/2010/06/stem-cell-transplantation-reference.html
http://en.wikipedia.org/wiki/Multiple_sclerosis
Organizer
Amanda Jane
Organizer
South Morang VIC
