Brid Cusacks life changing medical treatment fund
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Hi everyone, it's Bríd here. As some of you know, I have had a disability since I was a very small baby. At a young age I was diagnosed with Still's Disease, which is an autoimmune disease that mainly targets the Joints. So, for all of my life I have had Arthritis in most of my major joints and some of the minor ones. My neck, hips, knees, jaws and wrists, have been the most affected as well as each of the joints in all my fingers. With some signs of the disease in almost all of my joints. Stills disease means that there is a high likelihood of my organs being affected by autoimmune disorders as well. So Chronic Pain and Fatigue (possibly from constant chronic pain) have been a norm of my life.
Because of intolerances to many medicines as well as a Steroid allergy, I have had to manage for most of my life with natural medicines and self-care routines. I have had many, many years of Physiotherapy which basically has kept me moving the bit that I can, and I have tried almost every treatment and cure that I have come in contact with that looked like it may help, and even some which weren't completely connected to my disease, well, I have tried all the treatments that I could finance myself. And have managed quite well considering this is a degenerative and chronic disease.
In recent years as some of you may know, we were blessed with the arrival of baby Atéa. The pregnancy was tough and for various reasons, it has led to a situation where my mobility has been severely affected and reduced. I can no longer walk or get around unaided. Because of the arthritis in my hands, I cannot use even a self-propelling wheelchair which means that I always need someone with me to push me when in the chair. I can manage very short distances with a walking frame or crutches but because of the arthritis in my wrists and hands, I am limited to incredibly short distances if I want to keep some kind of ability to use my hands.
I have been very lucky in recent weeks, to receive a mobility scooter (from the health board) this means that whilst I still need someone with me to lift the scooter in and out of the car for me, while we are out and about I have some sense of independence. It is still very new to me and I really am enjoying getting to go for a walk with my loved ones and chat with them as we move along together (something I really miss when in a chair, as it is difficult to hear someone when you are in front of them and they can’t hear you very well as you are facing away from them, so conversation was always limited).
Basically, not being able to move around much for the majority of the pregnancy has dramatically affected my quality of life. I am now dependant on my wonderful partner Egidijus for all of my care, I need help getting dressed, and getting to and from the shower, He prepares my meals and fetches and carries for me as I cannot carry much, if anything, as I attempt to move around the house, and outside of the house he brings me where ever I need to go. This he does on top of looking after a 2 year old full time and of course all the rest of the household (including 2 teenagers).
A fall 18 months ago really badly affected my health again and the impact of that is still being felt.
I recently (in the last year or so) came across some information about a therapy in a clinic in Panama where doctors have been getting phenomenal results when treating autoimmune diseases. The Stem Cell therapy in this Institute is very different from stem cell therapies available in Europe and throughout various parts of the world. This therapy does not require a 'match' therefore the cells can be used for anyone, the doctors and scientists extract certain 'Golden Cells' from Stem Cells and this is what is used in the treatment. I will add a link below for if you would like to learn more about this therapy.
Basically it is the first time in my life (hitting 40 this year) where I have come across an actual Treatment that very well may cure my disease.
"Currently, autoimmune conditions are treated with immune suppressive agents such as steroids, methothrexate, cyclosporine, gold, and more recently infliximab (Remicade). Despite inducing temporary improvement, these approaches possess the possibility of long-term adverse effects, as well as need for life-long treatment.
Stem cell therapy has been demonstrated to induce profound healing activity in animals with various forms of autoimmune disorders. Besides healing damaged tissues, stem cells have the unique ability to modulate the immune system so as to shut off pathological responses while preserving its ability to fight off disease. Stem cells and specifically, mesenchymal stem cells home to inflamed tissue and start producing anti-inflammatory agents. These mediators act locally and do not suppress the immune response of the patient’s whole body. Additionally, mesenchymal stem cells induce the production of T regulatory cells, a type of immune cell whose function is to protect the body against immunological self-attack."
Excuse the direct quote from the Stem Cell Institutes website, but it very accurately says what I am trying to convey.
Since the Stem Cell Institute opened in 2006 they have performed over 10000 procedures. The scientists working there are among the top scientists in the world in this field.
And one of the most important factors for me? No major side effects! and I mean none. Some patients who need lumbar procedures have had minor side effects like nausea and dizziness but apart from that No reports of bad side effects to patients.
This is genuinely the most hopeful and only full 'treatment' I have come across that can help me get better.
My prognosis from doctors here in Ireland ?
I am being offered a double hip replacement as a high risk surgery patient, and my recovery will be so hindered by my being unable to use my hands and arms properly that I will be wheel chair bound for the rest of my life. Also because of the increased damage to my pelvis (from the pregnancy) my replacement hips will be unlikely to last beyond 7 - 10 years (usually a modern replacement will last up to 21 years) and when I am to return for my second and final replacements, my in-surgery risks will have increased 300 fold. This is not something that I can consider entering into. But there are no other options for the moment.
Going to the Stem Cell Institute and receiving treatment there could completely heal my system, Normalise my immune system without damaging it, and, help the damaged cells in my neck (C5-6 fusion) and hips (end stage damage) and throughout the joints in my body to heal.
I cannot put into words what this would mean to me. To get to walk unaided again, dare I hope to dance? run? to swim in the ocean? Walk on a beach? Hill walking? I have difficulty even thinking about it, but, to be able to get around the house, make a cup of tea for myself, prepare food for my family, wash myself without help, go for walks with my children, play on the floor with little Atéa, have her be free to climb on my lap and not have to learn so young to be careful of hurting mammy, for her to be able to run and jump up in my arms, and for me be able to lift and carry her. It breaks my heart to miss out on so much with her and to be so completely unable to help out and do all those things for my family that I did for so many years, and even as I write this I remind myself that all those years I was doing the best I could with failing joints and chronic unrelenting pain. To be able to be myself without disease and pain is as yet inconceivable to me. Even things like just getting to have a job and go to work each day is something that has never been within my reach.
And so to the crux of the issue, after being through the application process, including sending relevant documents from my doctors to the clinic in Panama, and being accepted for the treatment. I am now at the point of being able to make an appointment (there is a 6 – 8 week waiting list, they are very accommodating and happy for me to make my appointment as soon as I have the funds), I am also at the point where I need to ask for your help. The costs of the treatment is high and the figure I have worked out including the treatment costs which in themselves include accommodation in Panama for 5 days, this, with Flights to Panama included comes to €30,000. As someone who has had a disability for my whole life I have no means to raise this kind of money myself. I am asking that if you can, please help me to get to Panama, please, help me experience life with functioning joints, and no constant pain.
If you cannot help financially I completely understand (believe me I do) but any support you can offer will be very much appreciated, maybe sharing my story with others, or just a kind word.
Beannachtaí duit go léir, Bríd x
Because of intolerances to many medicines as well as a Steroid allergy, I have had to manage for most of my life with natural medicines and self-care routines. I have had many, many years of Physiotherapy which basically has kept me moving the bit that I can, and I have tried almost every treatment and cure that I have come in contact with that looked like it may help, and even some which weren't completely connected to my disease, well, I have tried all the treatments that I could finance myself. And have managed quite well considering this is a degenerative and chronic disease.
In recent years as some of you may know, we were blessed with the arrival of baby Atéa. The pregnancy was tough and for various reasons, it has led to a situation where my mobility has been severely affected and reduced. I can no longer walk or get around unaided. Because of the arthritis in my hands, I cannot use even a self-propelling wheelchair which means that I always need someone with me to push me when in the chair. I can manage very short distances with a walking frame or crutches but because of the arthritis in my wrists and hands, I am limited to incredibly short distances if I want to keep some kind of ability to use my hands.
I have been very lucky in recent weeks, to receive a mobility scooter (from the health board) this means that whilst I still need someone with me to lift the scooter in and out of the car for me, while we are out and about I have some sense of independence. It is still very new to me and I really am enjoying getting to go for a walk with my loved ones and chat with them as we move along together (something I really miss when in a chair, as it is difficult to hear someone when you are in front of them and they can’t hear you very well as you are facing away from them, so conversation was always limited).
Basically, not being able to move around much for the majority of the pregnancy has dramatically affected my quality of life. I am now dependant on my wonderful partner Egidijus for all of my care, I need help getting dressed, and getting to and from the shower, He prepares my meals and fetches and carries for me as I cannot carry much, if anything, as I attempt to move around the house, and outside of the house he brings me where ever I need to go. This he does on top of looking after a 2 year old full time and of course all the rest of the household (including 2 teenagers).
A fall 18 months ago really badly affected my health again and the impact of that is still being felt.
I recently (in the last year or so) came across some information about a therapy in a clinic in Panama where doctors have been getting phenomenal results when treating autoimmune diseases. The Stem Cell therapy in this Institute is very different from stem cell therapies available in Europe and throughout various parts of the world. This therapy does not require a 'match' therefore the cells can be used for anyone, the doctors and scientists extract certain 'Golden Cells' from Stem Cells and this is what is used in the treatment. I will add a link below for if you would like to learn more about this therapy.
Basically it is the first time in my life (hitting 40 this year) where I have come across an actual Treatment that very well may cure my disease.
"Currently, autoimmune conditions are treated with immune suppressive agents such as steroids, methothrexate, cyclosporine, gold, and more recently infliximab (Remicade). Despite inducing temporary improvement, these approaches possess the possibility of long-term adverse effects, as well as need for life-long treatment.
Stem cell therapy has been demonstrated to induce profound healing activity in animals with various forms of autoimmune disorders. Besides healing damaged tissues, stem cells have the unique ability to modulate the immune system so as to shut off pathological responses while preserving its ability to fight off disease. Stem cells and specifically, mesenchymal stem cells home to inflamed tissue and start producing anti-inflammatory agents. These mediators act locally and do not suppress the immune response of the patient’s whole body. Additionally, mesenchymal stem cells induce the production of T regulatory cells, a type of immune cell whose function is to protect the body against immunological self-attack."
Excuse the direct quote from the Stem Cell Institutes website, but it very accurately says what I am trying to convey.
Since the Stem Cell Institute opened in 2006 they have performed over 10000 procedures. The scientists working there are among the top scientists in the world in this field.
And one of the most important factors for me? No major side effects! and I mean none. Some patients who need lumbar procedures have had minor side effects like nausea and dizziness but apart from that No reports of bad side effects to patients.
This is genuinely the most hopeful and only full 'treatment' I have come across that can help me get better.
My prognosis from doctors here in Ireland ?
I am being offered a double hip replacement as a high risk surgery patient, and my recovery will be so hindered by my being unable to use my hands and arms properly that I will be wheel chair bound for the rest of my life. Also because of the increased damage to my pelvis (from the pregnancy) my replacement hips will be unlikely to last beyond 7 - 10 years (usually a modern replacement will last up to 21 years) and when I am to return for my second and final replacements, my in-surgery risks will have increased 300 fold. This is not something that I can consider entering into. But there are no other options for the moment.
Going to the Stem Cell Institute and receiving treatment there could completely heal my system, Normalise my immune system without damaging it, and, help the damaged cells in my neck (C5-6 fusion) and hips (end stage damage) and throughout the joints in my body to heal.
I cannot put into words what this would mean to me. To get to walk unaided again, dare I hope to dance? run? to swim in the ocean? Walk on a beach? Hill walking? I have difficulty even thinking about it, but, to be able to get around the house, make a cup of tea for myself, prepare food for my family, wash myself without help, go for walks with my children, play on the floor with little Atéa, have her be free to climb on my lap and not have to learn so young to be careful of hurting mammy, for her to be able to run and jump up in my arms, and for me be able to lift and carry her. It breaks my heart to miss out on so much with her and to be so completely unable to help out and do all those things for my family that I did for so many years, and even as I write this I remind myself that all those years I was doing the best I could with failing joints and chronic unrelenting pain. To be able to be myself without disease and pain is as yet inconceivable to me. Even things like just getting to have a job and go to work each day is something that has never been within my reach.
And so to the crux of the issue, after being through the application process, including sending relevant documents from my doctors to the clinic in Panama, and being accepted for the treatment. I am now at the point of being able to make an appointment (there is a 6 – 8 week waiting list, they are very accommodating and happy for me to make my appointment as soon as I have the funds), I am also at the point where I need to ask for your help. The costs of the treatment is high and the figure I have worked out including the treatment costs which in themselves include accommodation in Panama for 5 days, this, with Flights to Panama included comes to €30,000. As someone who has had a disability for my whole life I have no means to raise this kind of money myself. I am asking that if you can, please help me to get to Panama, please, help me experience life with functioning joints, and no constant pain.
If you cannot help financially I completely understand (believe me I do) but any support you can offer will be very much appreciated, maybe sharing my story with others, or just a kind word.
Beannachtaí duit go léir, Bríd x
Organizer
Bríd Ní Chiosóg
Organizer
County Tipperary
