As many of you may have heard, last Thursday, June 6, 2019, was an historical day for our community. Emgality became the first ever FDA approved drug developed to prevent cluster headache. We couldn’t be more excited! In addition to having a new and much needed treatment for our disease, this news will offer some more awareness, which is always great. Clusterbusters hopes this will, in part, help to usher in a new era of awareness and advocacy for those living with cluster headache.
With this news has come many questions. Please follow this link or see below for more information on Emgality. As always, we are here to help and as we receive new information for Eli Lilly and Company we will pass this on to you.
One of the major issues our community has had to deal with over the years in getting proper treatment has been the difficulty many of us have in getting a proper and timely diagnosis. Things have been getting better but there are still too many people waiting years for a proper diagnosis.
We are happy to announce that Clusterbusters is working with Dr. Morris Maizels, a headache specialist, to validate an online headache diagnostic tool that will help individuals receive a correct diagnosis more quickly.
This tool is currently in its final development stages and we need your help in fine tuning it. We all know that there are some major symptoms that easily detect cluster headaches. There are symptoms that some people experience in addition to these that sometimes cloud the initial diagnosis. We need to identify these symptoms and your participation in the process is needed.
Information about the study can be found at: https://clusterbusters.org/current-studies/chat/
Please take a few minutes to complete the survey and if possible, participate in a brief telephone interview to review the output of the survey. We are looking for as many survey completions as possible. We are especially interested in individuals with a known or suspected diagnosis of cluster headache, with variants or unusual forms of cluster headache, or who were mis-diagnosed before receiving a correct diagnosis. Even if you prefer not to participate in the telephone interview, it will help us to receive as many surveys as possible.
Your help now will help the entire community in the future.