Multiple Sclerosis HSCT Treatment
Donation protected
Hi everyone, my name is Ashley, I am 33 years old and am battling Multiple Sclerosis.
For those that are unsure about this disease, Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system. In MS, your immune system, which normally helps to fight infections, mistakes myelin (neuron coating) for a foreign body and attacks it. This damage (in the form of lesions or plaques) disrupts the flow of information travelling along nerve fibres from the brain to the body.
A little about me...
I am originally Canadian and have been living and working in Australia for the past three years.
It was 2009 when my first symptoms appeared. I was in the middle of a biochemistry presentation and I went blind in my right eye. This was the beginning of a very long and frightening process of trying to determine what was wrong and why this was happening to me. Not long after, I experienced episodes of numbness that spread to the complete left side of my body, from my face to my toes.
My neurologist was still hesitant to diagnose me but it was the results of my lumbar puncture (spinal tap) that finally put his uncertainty to rest. I was 27 when I was diagnosed with MS. The first course of treatment was a weekly intramuscular injection called Avonex. Not only was it a painful injection, the side effects were unbearable. I felt like I was constantly fighting the flu, I lived on pain medication to help deal with my fever and aches and pain. After a year of this I was put on another drug called Betaseron which I had to inject every other day. I continued this for as long as my skin could tolerate it. I had run out of injection sites that weren't affected by skin necrosis. I was finally put on an oral drug that I no longer had to inject called Tecfidera. The symptoms are far less severe and I am so grateful for every day that I don't have to inject.
Given that I am a Canadian living in Australia as a temporary resident (waiting for the final phase of my visa application to be approved), the high cost of my medication is not fully subsidized until I am a permanent resident, which I am hopeful for.
As much as I dreamed this drug would stop my MS symptoms, the disease, although slowed, has inevitably progressed.
I suffered another major episode when I lost most of my vision again in my right eye and partial vision in my left. I have sporadic relapses where my abdomen flares up. The pain is excruciating to the point where I've been repeatedly rushed to the hospital in the past...with the doctors believing it to be appendicitis but it never is. As it turns out I have a lesion in my spinal chord that blocks the blood supply to my abdomen. My relapses are triggered by stress and entail acute cramping and constant vomiting until the inflammation starts to subside which can a be a couple of days.
Right now there is no cure for MS but many who have the disease have undergone a treatment known as Hematopoietic Stem Cell Transplantation (HSCT) which has been approved for many other diseases and ailments. Unfortunately it is not an 'approved' therapy for MS so it is not subsidised or offered as a therapy within the public sector. As a result people are resorting to wait-listed clinical trials or private therapy clinics who are willing to preform the procedure but at a very hefty price.
HSCT includes autologous stem cells, in which bone marrow stem cells are harvested from the patient for later transplant, followed by a high dose of chemotherapy to eliminate the cause of the disease which are the autoimmune T-cells, responsible for the nervous system tissue damage.
The success rates and results are extraordinary, where people's MS has essentially become dormant and neuron repair is occurring. Many patients no longer experience relapses, they become symptom free and most importantly it stops the disease from progressing. A friend of mine underwent this procedure and she now considers herself MS free!!!
I didn't think my situation was urgent but as I get older and my disease continues to progress, I worry that time is not on my side and unfortunately neither is my financial state. I recently received my latest brain and spine MRI results, to which I am sad to report I have 5 new enhanced lesions. The conclusion? My disease is progressing. I do not have any children, I am not able to being on the medication that I am on and given my state of health. I am hoping that the HSCT procedure will give me the opportunity to become healthy enough to live without medication and have the option of one day having children, whether it's through IVF or adoption.
In the meantime I have my son Hooch, who is a 2 year old French Mastiff, he is my world and in some ways my therapy. Hooch also suffers from severe epilepsy and I like to think we both help each other through the challenges we face.
Thank you for taking the time to get to know me and my story. From the bottom of my heart, thank you for your kind generosity and support. There is no contribution too small, every little bit helps get me one step closer to treatment. I am forever grateful xx
Most sincerely,
Ashley
For those that are unsure about this disease, Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system. In MS, your immune system, which normally helps to fight infections, mistakes myelin (neuron coating) for a foreign body and attacks it. This damage (in the form of lesions or plaques) disrupts the flow of information travelling along nerve fibres from the brain to the body.
A little about me...
I am originally Canadian and have been living and working in Australia for the past three years.
It was 2009 when my first symptoms appeared. I was in the middle of a biochemistry presentation and I went blind in my right eye. This was the beginning of a very long and frightening process of trying to determine what was wrong and why this was happening to me. Not long after, I experienced episodes of numbness that spread to the complete left side of my body, from my face to my toes.
My neurologist was still hesitant to diagnose me but it was the results of my lumbar puncture (spinal tap) that finally put his uncertainty to rest. I was 27 when I was diagnosed with MS. The first course of treatment was a weekly intramuscular injection called Avonex. Not only was it a painful injection, the side effects were unbearable. I felt like I was constantly fighting the flu, I lived on pain medication to help deal with my fever and aches and pain. After a year of this I was put on another drug called Betaseron which I had to inject every other day. I continued this for as long as my skin could tolerate it. I had run out of injection sites that weren't affected by skin necrosis. I was finally put on an oral drug that I no longer had to inject called Tecfidera. The symptoms are far less severe and I am so grateful for every day that I don't have to inject.
Given that I am a Canadian living in Australia as a temporary resident (waiting for the final phase of my visa application to be approved), the high cost of my medication is not fully subsidized until I am a permanent resident, which I am hopeful for.
As much as I dreamed this drug would stop my MS symptoms, the disease, although slowed, has inevitably progressed.
I suffered another major episode when I lost most of my vision again in my right eye and partial vision in my left. I have sporadic relapses where my abdomen flares up. The pain is excruciating to the point where I've been repeatedly rushed to the hospital in the past...with the doctors believing it to be appendicitis but it never is. As it turns out I have a lesion in my spinal chord that blocks the blood supply to my abdomen. My relapses are triggered by stress and entail acute cramping and constant vomiting until the inflammation starts to subside which can a be a couple of days.
Right now there is no cure for MS but many who have the disease have undergone a treatment known as Hematopoietic Stem Cell Transplantation (HSCT) which has been approved for many other diseases and ailments. Unfortunately it is not an 'approved' therapy for MS so it is not subsidised or offered as a therapy within the public sector. As a result people are resorting to wait-listed clinical trials or private therapy clinics who are willing to preform the procedure but at a very hefty price.
HSCT includes autologous stem cells, in which bone marrow stem cells are harvested from the patient for later transplant, followed by a high dose of chemotherapy to eliminate the cause of the disease which are the autoimmune T-cells, responsible for the nervous system tissue damage.
The success rates and results are extraordinary, where people's MS has essentially become dormant and neuron repair is occurring. Many patients no longer experience relapses, they become symptom free and most importantly it stops the disease from progressing. A friend of mine underwent this procedure and she now considers herself MS free!!!
I didn't think my situation was urgent but as I get older and my disease continues to progress, I worry that time is not on my side and unfortunately neither is my financial state. I recently received my latest brain and spine MRI results, to which I am sad to report I have 5 new enhanced lesions. The conclusion? My disease is progressing. I do not have any children, I am not able to being on the medication that I am on and given my state of health. I am hoping that the HSCT procedure will give me the opportunity to become healthy enough to live without medication and have the option of one day having children, whether it's through IVF or adoption.
In the meantime I have my son Hooch, who is a 2 year old French Mastiff, he is my world and in some ways my therapy. Hooch also suffers from severe epilepsy and I like to think we both help each other through the challenges we face.
Thank you for taking the time to get to know me and my story. From the bottom of my heart, thank you for your kind generosity and support. There is no contribution too small, every little bit helps get me one step closer to treatment. I am forever grateful xx
Most sincerely,
Ashley
Organizer
Ashley Berini
Organizer
Freshwater NSW
