Help me beat MS with HSCT
Donation protected
For those that do not know me, my name is Kim Gable. I am a 44 yr old single mom suffering from an auto immune disease called multiple sclerosis (MS). My first symptoms began after the birth of my son in 1994 and I was diagnosed with relapse remitting MS (RRMS). RRMS is a disease of the central nervous system that interferes with nerve impulses within the brain, spinal cord, optic nerves and has periods of relapses and remissions. In RRMS you have relapses for a period of time with various symptoms which includes weakness/numbness in extremities, dizziness, impaired mobility, severe fatigue, tremors, visual changes, swallowing problems, bowel and blader problems. Then, with steroid treatment and rest for a few weeks/mos you usually return to your baseline function . Currently, there is no cure for MS, only medications to slow the progression.
In the beginning, I was treated with weekly injections and intermittent hospitalizations or intravenous steroid infusions at home. Those treatments seemed to do the job, at least for the first 12yrs. I managed being a single mom and working full time while having MS until things started to change. New vague symptoms began to intrude my body and life. I no longer could exercise or overheat as my extremities would go numb causing me not to be able to walk. The MS fatigue also became a big problem. Every bit of mental and physical exertion, exhausted my body and mind. My neurolologist changed my medications a few times to various pills and infusions. Despite the different medications, my MS symptoms continue to worsen and has advanced to secondary progressive MS (SPMS). With SPMS there is no more relapses, just progression and you never return to your baseline. There is also no specific drug to slow the progression of SPMS. It is a disease that is just going to keep getting worse.
My current symptoms include having to concentrate on my walking with every step and hope that my legs do what my brain is telling it to do. My walking has become slow and clumsy. It requires much concentration to accomplish the simple tasks that usually come easily to people my age. I now have bilateral foot drop which causes me to trip and fall. I wear a leg brace to help prevent me tripping over my toes. I also have left arm weakness which has effected my writing as I am left handed. Physical therapy and stretching is now a part of my daily life as it helps with the spasticity in my legs. The MS fatigue is more like a whole body and mind exhaution. When it hits me, it hits hard. The way my MS has been progressing the past 2 years, I know that a wheelchair is not far away.
I started researching treatments and trials. I also connected with others around the world with MS which led me to a promising procedure that can stop my MS. It may not reverse the symptoms I already have, but it has been successful in stopping MS. The treatment is hematopoietic stem cell transplant HSCT. Unforunately, the one hospital in the US doing this procedure turned me down due to having had MS to long. However, I applied and have been accepted to receive HSCT at Clinica Ruiz in Pueblo Mexico. I am on a 6-12 month waiting list but am expected to have it completed by the end of the year. This facility has been doing this procedure on MS patients successfully since the mid 90's. During the treatment I will stay in Mexico for 4-6 weeks and must bring a caregiver for the entire stay. This aggressive treatment involves removing some of my own stem cells and infusing high doses of chemotherapy agents for several days to destroy my own immune system. I will be kept in isolation while my immune system is eradicated. Then when my blood levels are in range, they will re-infuse my harvested stem cells back into me. This will give me a new immune sytem that no longer knows MS. When I return home i will require a chemo like agent infusion every 2 months. As with any major surgery there comes risks and complications which I fully understand. I am taking a risk every day living with MS while trying all these various medications which no longer can help me. Am I fearful of having HSCT completed in another country? The answer is "yes", but my fear of where this disease is headed scares me more then receiving HSCT in Mexico. HSCT is expected to be offered in the US to treat many diseases in the next 5+ years, but I am afraid to wait that long as I do not know what this disease will take away from me next. The thought of stopping my MS now, before my symptoms worsen, is a dream come true. I do not want this disease to beat me, I want to beat this disease.
This is where you, my family, friends, collegues, and acquaintances come into to play. Due to going out of the country for this procedure, my insurance will not cover any of it and cash payment is required prior to the procedure. The cost for the procedure is $54,500 . This does not include additional travel expenses, living expenses, or unforseen complications that could arise during my entire stay. I will also be out of work for approximately 4-6 months.
Those of you that know me, know that I am a private person that does not ask for help and usually the person wanting to help others. So, in this awkward moment, I am reaching out to you and asking for your financial help and prayers during this preperation and completion of this life changing procedure. All donations are tax deductible and will go toward my transplant related expenses only. Share this page on FB and help me beat MS.
http://www.healthline.com/health-news/ms-patients-who-received-stem-cell-transplants-still-in-remission-010715
Thank you for your support,
kim
In the beginning, I was treated with weekly injections and intermittent hospitalizations or intravenous steroid infusions at home. Those treatments seemed to do the job, at least for the first 12yrs. I managed being a single mom and working full time while having MS until things started to change. New vague symptoms began to intrude my body and life. I no longer could exercise or overheat as my extremities would go numb causing me not to be able to walk. The MS fatigue also became a big problem. Every bit of mental and physical exertion, exhausted my body and mind. My neurolologist changed my medications a few times to various pills and infusions. Despite the different medications, my MS symptoms continue to worsen and has advanced to secondary progressive MS (SPMS). With SPMS there is no more relapses, just progression and you never return to your baseline. There is also no specific drug to slow the progression of SPMS. It is a disease that is just going to keep getting worse.
My current symptoms include having to concentrate on my walking with every step and hope that my legs do what my brain is telling it to do. My walking has become slow and clumsy. It requires much concentration to accomplish the simple tasks that usually come easily to people my age. I now have bilateral foot drop which causes me to trip and fall. I wear a leg brace to help prevent me tripping over my toes. I also have left arm weakness which has effected my writing as I am left handed. Physical therapy and stretching is now a part of my daily life as it helps with the spasticity in my legs. The MS fatigue is more like a whole body and mind exhaution. When it hits me, it hits hard. The way my MS has been progressing the past 2 years, I know that a wheelchair is not far away.
I started researching treatments and trials. I also connected with others around the world with MS which led me to a promising procedure that can stop my MS. It may not reverse the symptoms I already have, but it has been successful in stopping MS. The treatment is hematopoietic stem cell transplant HSCT. Unforunately, the one hospital in the US doing this procedure turned me down due to having had MS to long. However, I applied and have been accepted to receive HSCT at Clinica Ruiz in Pueblo Mexico. I am on a 6-12 month waiting list but am expected to have it completed by the end of the year. This facility has been doing this procedure on MS patients successfully since the mid 90's. During the treatment I will stay in Mexico for 4-6 weeks and must bring a caregiver for the entire stay. This aggressive treatment involves removing some of my own stem cells and infusing high doses of chemotherapy agents for several days to destroy my own immune system. I will be kept in isolation while my immune system is eradicated. Then when my blood levels are in range, they will re-infuse my harvested stem cells back into me. This will give me a new immune sytem that no longer knows MS. When I return home i will require a chemo like agent infusion every 2 months. As with any major surgery there comes risks and complications which I fully understand. I am taking a risk every day living with MS while trying all these various medications which no longer can help me. Am I fearful of having HSCT completed in another country? The answer is "yes", but my fear of where this disease is headed scares me more then receiving HSCT in Mexico. HSCT is expected to be offered in the US to treat many diseases in the next 5+ years, but I am afraid to wait that long as I do not know what this disease will take away from me next. The thought of stopping my MS now, before my symptoms worsen, is a dream come true. I do not want this disease to beat me, I want to beat this disease.
This is where you, my family, friends, collegues, and acquaintances come into to play. Due to going out of the country for this procedure, my insurance will not cover any of it and cash payment is required prior to the procedure. The cost for the procedure is $54,500 . This does not include additional travel expenses, living expenses, or unforseen complications that could arise during my entire stay. I will also be out of work for approximately 4-6 months.
Those of you that know me, know that I am a private person that does not ask for help and usually the person wanting to help others. So, in this awkward moment, I am reaching out to you and asking for your financial help and prayers during this preperation and completion of this life changing procedure. All donations are tax deductible and will go toward my transplant related expenses only. Share this page on FB and help me beat MS.
http://www.healthline.com/health-news/ms-patients-who-received-stem-cell-transplants-still-in-remission-010715
Thank you for your support,
kim
Organizer
Kim Gable
Organizer
Chadds Ford Township, PA