Posted by: hockeygrl1 | April 8, 2011

Women’s Issues

It’s kind of ironic that the budget is stuck because of women’s issues when funding for disease research can be stuck the same way.  Lupus does effect men, but 9 out of 10 effected with lupus are women. This may be because many men do not report their symptoms to doctors or that the disease  affects women more; what we need is more research. Regardless, Benlysta is the first drug approved for lupus in 50 years.

Part of the problem is that lupus mimics other diseases. I know in my case I had high blood pressure at age 25 and they just started me on medications and did not look in to the real cause of the HBP. Now it seems odd to me. I wasn’t over weight at that time and ate a good diet. There had to be a cause. No one investigated further. When I’d bring up fatigue, the doctors attributed it to me being a single mom and working a lot. I don’t know any one other than chronic fatigue sufferers that can sleep all day and still sleep at night. Still no one put 2 and 2 together.

Another problem with lupus and getting proper treatment is it can affect everyone differently. Different systems and many systems can be involved. Some systems are thought to not be affected by lupus but as research is done doctors are seeing it is more common. For me it was my pancreas. It may be ill-defined in doctors eyes so they have trouble diagnosing it.

This also can make the treatment of lupus difficult. Everyone reacts to the medications used to treat lupus differently as well.  What works for one patient will not work for another and many of the treatments are very toxic. The side-effects of these toxic medications may affect treatment as well. The goal is to go into remission but it will not mean being off of medications and it may not mean feeling any better.

I did find this article that I think explains what is going on inside my body well.

It is a complex series of events. The cells attacking ones it shouldn’t and not cleaning out all that they should. I guess it’s understandable why doctors and researchers cannot find an effective treatment.

But I will keep hoping that someone someday will find a way to cure me so I can carry out my dreams.


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