October is Lupus Awareness Month
Current mood: hopeful
It's that time of the year again.
Awareness month for Lupus.
I cringe over this... I really do.
Why?
Because October is also Breast Cancer Awareness month.
I don't want to "compete" with that.
I mean who in their right mind would?
It just really bothers me that we have to campaign at all to get the attention necessary to promote awareness, early diagnosis and research funding for prevention, treatment and a cure for any disease.
When something bad happens to someone you love, you want the world to know about it and you want to do something to make things right again.
But, that is how our mainstream culture works in this country of ours...
we compete for a cure...
so here it goes...
AHEM...
YooHoo!
IT'S LUPUS AWARENESS MONTH.
The friends and subscribers over at Winga's World have been incredibly kind about me and my lupus soapbox. Actually their generosity helped my neice exceed her fund raising goal for the Lupus Walk this year.
It's not like I grew up saying to myself, "Hmm... someday I will be an advocate for lupus patients."
Um... nope.
Far from that.
The reality is that I got smacked down with this disease and started blogging about it in 2003.
One year into my whining and complaining, AOL took notice and featured my lupus blog during Lupus Awareness Month.
So folks thought I knew something about lupus and...
From there I have been on a roller coaster.
People started e-mailing me from all over the place with their personal struggles with lupus. Most of them in much worse shape than myself.
Today I think of one particular "lupie" penpal:
A young woman who only wanted to talk to me about music, not lupus, died unexpectedly recently at the tender age of 28 from lupus nephritis.
Her physicians failed to recognize the seriousness of her condition...
which is so typical for lupus patients.
She was in the hospital and the docs were telling her parents that their daughter could probably go home in 24 hours.
The next day she was gone.
I asked her father what he and her family would have me do for them.
He begged me to make people AWARE of lupus...
how dangerous it really is so that no other parent will suffer such a horrible loss as he and his wife have.
So I went from whining and complaining to becoming a lupie penpal to now this...
Lupus is a very serious potentially life threatening disease that is under diagnosed, especially in minority populations.
A lupus diagnosis used to be considered a death sentence.
Now 90% of us will survive past the ten year mark.
Some of us even go on to have relatively normal lives.
But, the reality is for the majority...
we are surviving, but quality of life issues consistently suffer. So much more needs to happen.
You probably already know someone with lupus.
So, what should you do about it?
Whatever your heart dictates you to do.
That's all.
Now I will hop off of my lupus soapbox.
Please think about reading the article below.
If any of this rings a bell for you, there our some web page links so you can read more.
As always, I welcome correspondence from follks with lupus, and their loved ones.
You NEVER EVER need to suffer silently.
Do not be alone with this.
Send me an e-mail, I'll do my best to be a support for you and/or link you up with the support you need.
..Loretta
*************************
LFA Seeks to Increase Public Awareness of Lupus Symptoms and Consequences-
Lupus Foundation of America
Purple is the color for Lupus Awareness
While most women are aware of the signs and health risks of breast cancer and heart disease, few are aware of a serious health problem that strikes mostly young women between the ages of 15 and 45.
The disease is lupus.
Lupus a chronic (lifelong) disease in which the immune system, for unknown reasons, becomes out of balance, causing inflammation and serious tissue damage to virtually any organ in the body.
Lupus is two to three times more common among African Americans, Hispanics, Asians and Native Americans than among Caucasians. Even though approximately 1.5 million Americans have lupus, two-thirds of Americans report they are unaware of lupus or its potentially disabling and life-threatening consequences.
Lupus Can Damage Any Organ System
What is most troubling about the lack of awareness of lupus is that early recognition, diagnosis and treatment of lupus often can prevent serious consequences, such as heart disease, stroke and kidney failure.
Lupus is more than joint pain, fatigue, fevers, and skin rashes – common symptoms of the disease.
Inflammation caused by lupus can damage the heart, lungs, kidneys and brain, resulting in significant disability or death:
Women with lupus have a five- to ten-fold increased risk of coronary heart disease.
Between 30 and 50 percent of people with lupus will develop nephritis, or kidney disease.
People with lupus are at great risk for blood clots, stroke, and seizures.
Diagnosis of Lupus Can Be Difficult
Lupus is difficult to diagnose because initial symptoms often are dismissed as nothing serious.
Because lupus develops most often in young adults, and disease activity comes and goes, it is not uncommon for people with lupus to suffer several years before doctors can make an accurate diagnosis.
Many people with lupus visit three or more doctors over four or more years before they are correctly diagnosed.
Currently, there is no single laboratory test that can determine whether a person has lupus.
Diagnosis is usually made by a careful review of a person's entire medical history coupled with an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status.
The Lupus Foundation of America website has a questionnaire that can help individuals determine if they need to consult with a doctor about lupus.
Click here to take the test.
Test Yourself for Lupus
Latest News
LFA Seeks to Increase Public Awareness of Lupus Symptoms and Consequences
LFA and its nationwide network of chapters and support groups is undertaking a national campaign to educate the public, health professionals and policy makers about lupus and its impact on individuals, families and society.
Watch Lupus Foundation of America Representatives Discuss Lupus on ABC's Good Morning America Dr. Susan Manzi, a member of the LFA Medical-Scientific Advisory Council, presented an overview of lupus and Kelly Drury, an LFA national spokesperson, discussed her personal battle with lupus.
Tell Your Senators to Sign Onto the Specter-Harkin Dear Colleague Letter!
Take Immediate Action to Increase Funding for Lupus Research!
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