Hope for UC Sufferers: Ryan + more
Donation protected
My name is Ryan and I was diagnosed with Ulcerative Colitis (UC) at the young age of 18 years. For the first few years following my diagnosis I was in remission - I was able to enjoy life to the fullest and, at points, thought that the doctors had misdiagnosed me. I felt this way until about two and a half years ago when my life took a dramatic turn for the worse. Out of nowhere, I began to experience the worst UC flare of my life.
The physical symptoms were debilitating and the emotional toll was extreme. I sought many avenues of medical care, tried almost every known UC treatment with little to no lasting success. From Asacol to Lialda, Canasa and ultimately a very high dose of prednisone and still did not achieve remission. My GI doctor became increasingly concerned due to my inability to respond to treatment and my prolonged exposure to the steroids. We re-assessed my medical approach; I got off the steroids and immediately began Remicade infusions. Unfortunately, my health deteriorated faster than I could have ever imagined.
After eliminating the prednisone from my life, the often-debilitating pains returned. The pains affected my social life, my job performance, my emotional and mental health; simply, my overall quality of life. To make matters worse, I had a very negative reaction to Remicade which resulted in being hospitalized twice and missing more work. I was already thin but lost over 50 lbs in the span of a few months. My 6 foot 2 inch frame was reduced to only 145 lbs. which greatly concerned me and my doctors. The aforementioned is highly understated in that the story of my late twenties and early thirties, which should have been my prime– instead was ruled by this horrific and debilitating condition.
There is a silver lining here; shortly afterwards I learned of a clinical trial being conducted at Stanford University to test a substance derived from a purified botanical extract. Reading about the story of the person who initiated the study was like looking in a mirror - it resonated with me on so many levels. Desperate for relief and with the support of my family and doctors, I volunteered for and was accepted into the clinical trial.
I wasn't sure what to expect as being a subject in a trial such as this was a very new experience for me. After only a few weeks on this trial medication, my symptoms slowly began to lessen and started to believe that I may be on my way to resembling a “normal” life. This drug targets several major areas of symptomatic concern, aiming to produce reduced urgency and frequency and moreover, weight gain. These were some benefits I desperately sought and fortunately it was working! There were mornings when I woke up and rejoiced at the increasing weight the scale showed. There were evenings when I could eat a meal in one sitting without having to bolt to the rest room. I even recall a time where I almost slept through the entire night without having to get up. My energy slowly began to return, my supervisor and colleagues noticed a marked increase in my enthusiasm and daily endurance. I finally was beginning to feel re-connected to my passions and my overall self after two long years. My medical response to this medication after only 2 months was absolutely extraordinary. The sigmoid scope images before and after treatment showed that my once extremely ulcerated, inflamed and irritated tissue appeared almost totally healthy at the end of the trial.
Unfortunately, as rapidly as the positive results took effect during the 2-month trial, once the study ended and I was off the medication, they seem to be fleeting just as quickly. The physical and emotional symptoms of this condition are so greatly intertwined, that upon signs of slipping back into the flare, the hope I found while taking the trial agent is abandoning me as well. I have experienced another flare and I am now in fear that my body will reverse the wonderful gains I saw during the trial.
Given the restorative benefits I achieved through this short-term trial, I sincerely believe that this medication could benefit other people suffering with Ulcerative Colitis.
The research team behind the medication and the trial are sympathetic to my story and that of others, as they have walked in our shoes. They believe there is hope for me and hundreds of thousands of other UC sufferers. They are prepared to produce a batch of the medication and to conduct a trial on UC sufferers like me with an extended length of time under the medication. They believe the longer time under the medication could produce lasting benefit. Unfortunately, they don't have the funds for this extended trial.
The team needs a total of $200,000 USD to produce medication in a proper manner. Amazingly, we have been able to secure a promise for the first $50,000 toward this amount! So, we are already a quarter of the way there. With your help, I am sure we can reach the finish line!
Your generous donations have the ability to restore my livelihood and that of many others like me, potentially restoring normalcy to a growing population of Ulcerative Colitis sufferers. Your donation will be routed to a charitable organization, so it may be tax deductible (check with your advisor). No donation is too large or too small so please help me to raise $150,000 to allow the team to produce medication to help UC sufferers. Please contribute to this most worthwhile cause!
UPDATE: An extremely generous and compassionate individual has pledged $10,000!! Combining this with the initially donated sum, I have adjusted our new total goal to $140,000.
The physical symptoms were debilitating and the emotional toll was extreme. I sought many avenues of medical care, tried almost every known UC treatment with little to no lasting success. From Asacol to Lialda, Canasa and ultimately a very high dose of prednisone and still did not achieve remission. My GI doctor became increasingly concerned due to my inability to respond to treatment and my prolonged exposure to the steroids. We re-assessed my medical approach; I got off the steroids and immediately began Remicade infusions. Unfortunately, my health deteriorated faster than I could have ever imagined.
After eliminating the prednisone from my life, the often-debilitating pains returned. The pains affected my social life, my job performance, my emotional and mental health; simply, my overall quality of life. To make matters worse, I had a very negative reaction to Remicade which resulted in being hospitalized twice and missing more work. I was already thin but lost over 50 lbs in the span of a few months. My 6 foot 2 inch frame was reduced to only 145 lbs. which greatly concerned me and my doctors. The aforementioned is highly understated in that the story of my late twenties and early thirties, which should have been my prime– instead was ruled by this horrific and debilitating condition.
There is a silver lining here; shortly afterwards I learned of a clinical trial being conducted at Stanford University to test a substance derived from a purified botanical extract. Reading about the story of the person who initiated the study was like looking in a mirror - it resonated with me on so many levels. Desperate for relief and with the support of my family and doctors, I volunteered for and was accepted into the clinical trial.
I wasn't sure what to expect as being a subject in a trial such as this was a very new experience for me. After only a few weeks on this trial medication, my symptoms slowly began to lessen and started to believe that I may be on my way to resembling a “normal” life. This drug targets several major areas of symptomatic concern, aiming to produce reduced urgency and frequency and moreover, weight gain. These were some benefits I desperately sought and fortunately it was working! There were mornings when I woke up and rejoiced at the increasing weight the scale showed. There were evenings when I could eat a meal in one sitting without having to bolt to the rest room. I even recall a time where I almost slept through the entire night without having to get up. My energy slowly began to return, my supervisor and colleagues noticed a marked increase in my enthusiasm and daily endurance. I finally was beginning to feel re-connected to my passions and my overall self after two long years. My medical response to this medication after only 2 months was absolutely extraordinary. The sigmoid scope images before and after treatment showed that my once extremely ulcerated, inflamed and irritated tissue appeared almost totally healthy at the end of the trial.
Unfortunately, as rapidly as the positive results took effect during the 2-month trial, once the study ended and I was off the medication, they seem to be fleeting just as quickly. The physical and emotional symptoms of this condition are so greatly intertwined, that upon signs of slipping back into the flare, the hope I found while taking the trial agent is abandoning me as well. I have experienced another flare and I am now in fear that my body will reverse the wonderful gains I saw during the trial.
Given the restorative benefits I achieved through this short-term trial, I sincerely believe that this medication could benefit other people suffering with Ulcerative Colitis.
The research team behind the medication and the trial are sympathetic to my story and that of others, as they have walked in our shoes. They believe there is hope for me and hundreds of thousands of other UC sufferers. They are prepared to produce a batch of the medication and to conduct a trial on UC sufferers like me with an extended length of time under the medication. They believe the longer time under the medication could produce lasting benefit. Unfortunately, they don't have the funds for this extended trial.
The team needs a total of $200,000 USD to produce medication in a proper manner. Amazingly, we have been able to secure a promise for the first $50,000 toward this amount! So, we are already a quarter of the way there. With your help, I am sure we can reach the finish line!
Your generous donations have the ability to restore my livelihood and that of many others like me, potentially restoring normalcy to a growing population of Ulcerative Colitis sufferers. Your donation will be routed to a charitable organization, so it may be tax deductible (check with your advisor). No donation is too large or too small so please help me to raise $150,000 to allow the team to produce medication to help UC sufferers. Please contribute to this most worthwhile cause!
UPDATE: An extremely generous and compassionate individual has pledged $10,000!! Combining this with the initially donated sum, I have adjusted our new total goal to $140,000.
Organizer
Emily Pelc
Organizer
San Jose, CA