My Opera
Monday, February 4, 2013 3:52:34 AM
I would like to thank every single one of you who have participated in the MSK project thus far. The information that has been collected has created so many questions as well as answers for MSK patients all over the world. Shortly Phase III will come to an end and a very exciting Phase IV will begin.
As most of you know, very little research has been done on symptomatic MSK patients. This lack of knowledge has caused absolute frustration in patients that suffer daily, myself included, because this disease is so horribly misunderstood. The amount of work that has gone into developing Phase IV gives me goosebumps, and the excitement that comes with it makes me want to jump out of my skin! Research on disease is, for the most part, initiated by researchers interested in that particular study. Finding someone interested in MSK has been a torturous task, but our very own La Velle Goodwin has succeeded! In order for researchers to initiate research there has to be a demand for it, with enough patients to justify the time and resources to search for answers. Finding someone to research MSK has been very hard because most patients are not symptomatic, leaving the few of us who are symptomatic feeling empty and without answers. In fact, most patients are diagnosed accidentally through imaging that was ordered to check for other problems. Fortunately, I am thrilled to announce that Phase IV of the MSK project will be guided by Dr. Giovanni Gambaro, one of the leading researchers on urological and nephrological diseases, including MSK. When La Velle reached out to Dr. Gambaro it was to make him aware that a large group of people suffer from a variety of symptoms that do not fit the typical MSK medical definition, including chronic pain and chronic fatigue. This piqued Dr. Gambaro's curiosity and he was able to see first hand the amount of people who actually suffer from severe chronic conditions with one disease in common, MSK. As a result, MSK patients now have a champion, a highly qualified researcher who has agreed to learn more and to study us so that we may be able to find some of the answers to the many questions we have, and to enable us to validate our complaints to our local medical communities.
I can't describe the excitement that runs through me as we prepare for this new adventure. For so long, I have complained that no one understands, that no one cares to understand, but now someone is finally listening. We, as symptomatic MSK patients, finally have someone willing to study us and to learn more about what we are enduring! I can't stress how important this is for us as patients and for our quest for answers. How can we sit and complain about no one understands, yet we do nothing to advocate for ourselves? I can't encourage you enough to participate in this Phase IV. We may not be able to put an immediate end to our suffering but, through this effort, we should be able to gain enough insight and knowledge to re-educate the doctors who treat us.
As most of you know, very little research has been done on symptomatic MSK patients. This lack of knowledge has caused absolute frustration in patients that suffer daily, myself included, because this disease is so horribly misunderstood. The amount of work that has gone into developing Phase IV gives me goosebumps, and the excitement that comes with it makes me want to jump out of my skin! Research on disease is, for the most part, initiated by researchers interested in that particular study. Finding someone interested in MSK has been a torturous task, but our very own La Velle Goodwin has succeeded! In order for researchers to initiate research there has to be a demand for it, with enough patients to justify the time and resources to search for answers. Finding someone to research MSK has been very hard because most patients are not symptomatic, leaving the few of us who are symptomatic feeling empty and without answers. In fact, most patients are diagnosed accidentally through imaging that was ordered to check for other problems. Fortunately, I am thrilled to announce that Phase IV of the MSK project will be guided by Dr. Giovanni Gambaro, one of the leading researchers on urological and nephrological diseases, including MSK. When La Velle reached out to Dr. Gambaro it was to make him aware that a large group of people suffer from a variety of symptoms that do not fit the typical MSK medical definition, including chronic pain and chronic fatigue. This piqued Dr. Gambaro's curiosity and he was able to see first hand the amount of people who actually suffer from severe chronic conditions with one disease in common, MSK. As a result, MSK patients now have a champion, a highly qualified researcher who has agreed to learn more and to study us so that we may be able to find some of the answers to the many questions we have, and to enable us to validate our complaints to our local medical communities.
I can't describe the excitement that runs through me as we prepare for this new adventure. For so long, I have complained that no one understands, that no one cares to understand, but now someone is finally listening. We, as symptomatic MSK patients, finally have someone willing to study us and to learn more about what we are enduring! I can't stress how important this is for us as patients and for our quest for answers. How can we sit and complain about no one understands, yet we do nothing to advocate for ourselves? I can't encourage you enough to participate in this Phase IV. We may not be able to put an immediate end to our suffering but, through this effort, we should be able to gain enough insight and knowledge to re-educate the doctors who treat us.
