Has anyone ever thought about starting a non profit organization for research?

United States
May 21, 2009 12:40am CST
It seems like there isnt enough information out there for me to determine how I got this disease. Within the last month I have found out that three other women that I grew up with on the same street were also diagnosed with lupus. At first i thought this disease was very rare because no one really new anything about it but now its like its more and more people that are getting diagnosed with it. There are so many questions that are left unanswered, and i believe that if we knew more about this disease and what causes it, then maybe doctors can work on a cure.I really cant believe that those other three women that i grew up with, being diagnosed with lupus is just a coincidence, that just seems to close together,we were all literally next door neighbors. Thats why i have been gathering as much info on the topic as I can, knowing more cant hurt. One women that i talked to informed me that her doctor told her that her lupus came from stress, which was the first time I had ever heard this.When I was diagnosed there were so many questions that were left unanswered. When I asked my doctor how did this happen to me, and what was the cause of it, she didnt have an answer. Thats what motivated me to start doing my own research.There are a whole lot of great lupus foundations around, but it still seems like no one really knows everything that there is to know about lupus. Then with all the medications its like trial ane error. No one medication works for every person. I just think that people need to be educated as much as they can on lupus in order to make a change in how things are going now.
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1 response
• Canada
21 May 09
That would be a great organization to start. My mother has lupus. She was really sick when I was little, but she has had it in remission for 25 years. We recently discovered that my sister also has lupus, and ironically enough so does her husband, my brother-in-law. Now we are watching ME very closely to see if it develops in me. It developed in my sister when she was about my age.
• United States
21 May 09
That's really weird because the doctors keep saying that it's not hereditary, or contagious. Thats why I say there needs to be more research done, maybe the doctors are not doing the right kind of tests.