This is the man with the plan: Dr. Richard Burt. This short interview gives a helpful overview of the HSCT process and how it can help not only people with RRMS, but also folks with other autoimmune diseases such as Crohn's disease, scleroderma and chronic inflammatory demyelinating polyneuropathy (CIPD).
Tuesday, May 12, 2015
This is the man with the plan: Dr. Richard Burt. This short interview gives a helpful overview of the HSCT process and how it can help not only people with RRMS, but also folks with other autoimmune diseases such as Crohn's disease, scleroderma and chronic inflammatory demyelinating polyneuropathy (CIPD).
Monday, May 11, 2015
It begins!
Hello world! It's great to meet you. Let me tell you a little bit about why I'm here.
Ten years ago last month I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). At the time I was newly married, had just finished my first semester at Agnes Scott College and had law school in my sights. I worked at the front desk of a spa, which as luck would have it was two doors down from an optometrist. This is important because when I noticed a grey spot in the center of my field of vision in January of 2005, a spot that was growing by the day, I walked the two doors over on my lunch break and asked the receptionist if the doctor could fit me in. Thirty minutes later I left the optometrist's office with a referral to a neuro-ophthalmologist, who would eventually send me to the neurologist who would find the tell-tale lesions on my brain.
The decade in between that day and this one have been eventful. I pushed forward with a different career path, choosing the nonprofit sector and service in AmeriCorps instead of the law. I became a mother. Buried my own. Became a mother again. Throughout I worked in nonprofit management, serving as the Director of Operations for a local organization that served women in crisis. I took my medicine, pushed through the discomfort and tried to accept the idea that the limits MS placed on me were mine forever. I got really, really good at feeling like crap without showing it.
MS is like someone playing Disability Drop Darts above your head, with random symptoms presenting themselves depending on which part of your grey matter your immune system is shredding that day. Stress is a trigger, as is heat, infection and who knows what else. It has been like living under the gun, roulette style, waiting for the relapse that takes my mobility for good this time, or my ability to pee without self catheterizing, or walk across the room without having a seizure. Every time I have a relapse most of the symptoms recede with steroids. But I live in fear of the day they don't.
So that's my MS Story thus far, but now there is some hope on the horizon: HSCT, or hematopoietic stem cell transplant, is offering the closest thing to a cure we've heard of yet. At Northwestern Memorial Hospital, Dr. Richard Burt has been running a trial for the past 14 years that is providing hope to MS sufferers all over the world. The process is long and grueling, not for the faint at heart, but if it works? If it works it's a second chance. Currently they have a success rate of over 80%, meaning that after 5 years, over 80% of trial participants are relapse free without any disease modifying drugs necessary. No more shots. No more pills. No more crazy side effects and tremendous expense. No more rolling the dice that the treatment won't kill you. Just...life.
I have to tell you, world, the idea of that kind of freedom makes me giddy. I want that life for myself and for my family. To that end, I have started the process of sharing my story and raising funds for this amazing, groundbreaking, life-altering-yet-so-very-cost-prohibitive treatment. Even with insurance, the cost for the 8 week treatment and related expenses will be $50,000. This is a huge sum, and entirely out of my reach, though it is still less than the cost of only one year of the disease modifying drugs prescribed to people with RRMS. I am turning to my community and beyond to try and make my MS Eviction possible. Please stay tuned, and thank you for your interest!
Ten years ago last month I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). At the time I was newly married, had just finished my first semester at Agnes Scott College and had law school in my sights. I worked at the front desk of a spa, which as luck would have it was two doors down from an optometrist. This is important because when I noticed a grey spot in the center of my field of vision in January of 2005, a spot that was growing by the day, I walked the two doors over on my lunch break and asked the receptionist if the doctor could fit me in. Thirty minutes later I left the optometrist's office with a referral to a neuro-ophthalmologist, who would eventually send me to the neurologist who would find the tell-tale lesions on my brain.
The decade in between that day and this one have been eventful. I pushed forward with a different career path, choosing the nonprofit sector and service in AmeriCorps instead of the law. I became a mother. Buried my own. Became a mother again. Throughout I worked in nonprofit management, serving as the Director of Operations for a local organization that served women in crisis. I took my medicine, pushed through the discomfort and tried to accept the idea that the limits MS placed on me were mine forever. I got really, really good at feeling like crap without showing it.
MS is like someone playing Disability Drop Darts above your head, with random symptoms presenting themselves depending on which part of your grey matter your immune system is shredding that day. Stress is a trigger, as is heat, infection and who knows what else. It has been like living under the gun, roulette style, waiting for the relapse that takes my mobility for good this time, or my ability to pee without self catheterizing, or walk across the room without having a seizure. Every time I have a relapse most of the symptoms recede with steroids. But I live in fear of the day they don't.
So that's my MS Story thus far, but now there is some hope on the horizon: HSCT, or hematopoietic stem cell transplant, is offering the closest thing to a cure we've heard of yet. At Northwestern Memorial Hospital, Dr. Richard Burt has been running a trial for the past 14 years that is providing hope to MS sufferers all over the world. The process is long and grueling, not for the faint at heart, but if it works? If it works it's a second chance. Currently they have a success rate of over 80%, meaning that after 5 years, over 80% of trial participants are relapse free without any disease modifying drugs necessary. No more shots. No more pills. No more crazy side effects and tremendous expense. No more rolling the dice that the treatment won't kill you. Just...life.
I have to tell you, world, the idea of that kind of freedom makes me giddy. I want that life for myself and for my family. To that end, I have started the process of sharing my story and raising funds for this amazing, groundbreaking, life-altering-yet-so-very-cost-prohibitive treatment. Even with insurance, the cost for the 8 week treatment and related expenses will be $50,000. This is a huge sum, and entirely out of my reach, though it is still less than the cost of only one year of the disease modifying drugs prescribed to people with RRMS. I am turning to my community and beyond to try and make my MS Eviction possible. Please stay tuned, and thank you for your interest!
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