Tuesday, October 02, 2007

National Lupus Awareness Month

October is National Lupus Awareness Month.

This month has been set aside over the past 20+ years to help raise the public's awareness about this devastating illness. According to the Lupus Foundation of America, about 1.5 million Americans have been diagnosed with this illness, and my daughter is one of them. She was diagnosed in 2004, at the age of 16, and most cases of this disease are diagnosed between the ages of 15 and 45. It is typically known as a "woman's disease" and it afflicts certain ethnic groups more than others - such as African Americans, Hispanics, Asians, and Native Americans.

Lupus is an autoimmune disease where healthy tissues and organs are attacked - it's as though the body turns against itself and the immune system gets out of control. It can involve the joints, skin, kidneys, lungs, liver, heart, and brain - and it can cause circulatory problems and anemia. A lot of times, there is a tell-tale rash which spreads across a patient's cheeks and nose and the rash resembles a butterfly. In TP's case, it attacked her kidneys viciously, and she also developed anemia, and she developed some problems with her liver.

Fortunately, treatments have improved over the past twenty years, but there is still a lot of work left to be done. TP is now in remission, thanks to an aggressive medication regimen and a couple of knowledgeable physicians at Children's Hospital who treated her. TP still has bloodwork done every 6 weeks to see if there is any activity indicating that her lupus is returning - but so far, we have been blessed with her good health for almost two years now. She still has to be careful when she's exposed to viruses because of her body's inability to fight off disease, and she really shouldn't be exposed to the sun for very long periods of time. Her experience at Children's helped to form her decision to become a nurse, and she will be a great one. She will know how to help children who are gravely ill because she was a child who has "been there".

Please visit the lupus website at www.lupus.org , which has a wealth of information about this disease, the treatment advances made, and the need for additional research to hopefully find a cure someday. Even though lupus can go into remission, it can rear its' ugly head again at any given moment. If you're so inclined, you can make a donation to help with the cost of research.


At 10:22 AM, Blogger Sarah said...

I just learned of a friend that has Lupus. She has known for years, but doesn't talk much about it. She is pregnant now, and is not taking her medications. She did this with her other pregnancy's and has done fine, but of course I'm worried about her. Is it really dangerous to be off meds for Lupus?

Does your daughter take medication to control her Lupus? Or does remission mean she is free of this disease?


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