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Yes Lupus, but no Purple Butterfly Band

Posted May 10 2010 12:00am

Image: Francesco Marino / FreeDigitalPhotos.net

Have you ever signed up for a newsletter from a trusted organization, seeking answers, only to find the content VERY disconcerting?   I have.  I am speaking about the Lupus Foundation of America (LFA) , the country’s most well-known lupus organization.  They use purple bands to represent “courage and endurance,” and a butterfly to symbolize a creature who begins its life crawling, but soars in the end.  But the LFA, while raising awareness, is far too focused on pharmacetuical intervention, and ignores much evidence on how nutrition intervention plays a significant role in the recovery process.

To their credit, the LFA helps to bring publicity to an overlooked disease.  They have declared May “Lupus Awareness Month” and May 10th “World Lupus Day.”  They are trying to advance treatment of a disease, that is, as Dr. John McDougall would say, not very “sexy.”  No advanced surgeries exist to cure lupus.  There are no fancy Ads, no well-known celebrities speaking out, and few fundraisers.  There’s no easy “sick” or “cured” status – lupus patients are sick, and sick for a long time.  If this is new information for you, don’t be surprised.  Awareness is pretty low.  This may come as a shock, too: lupus is more prevalent than AIDS, sickle cell anemia, muscular dystrophy, cerebral palsy, multiple sclerosis, and cystic fibrosis combined .

The LFA page encourages individuals to raise awareness by doing the following:

I applaud the LFA for raising awareness.  Unfortunately, they are missing an enormous opportunity to share valuable information.

Despite all of the LFA’s effort, they fail to mention the significant impact of nutrition intervention; their website, e-newsletters, and magazines, fix their hopes on one goal: pharmaceutical treatments.    Parties with a financial interest in treating lupus patients have ignored nutritional intervention for years, despite being a safer, and more sustainable treatment regimen.  Notice four of the above points are asking for money.  While I recognize money is needed to perform research, I also know that donations are funding the drug industry, not nutrition research.  Why?  Simple: healthy patients are not nearly as profitable as patients who spend their lives on all the medications that lupus patients use: anti-inflammatories, corticosteroids, antimalarials, immunosuppressives, anticoagulants, and chemo agents.  All these regimens have dangerous side effects and none address  the root cause of the disease.

Organizations like LFA attribute lupus to a genetic predisposition, environmental triggers, hormones, a virus, medications, or a combination of these factors.  This is the politically correct response, but certainly not a complete explanation.  Research has demonstrated foods are either health promoting or disease producing based on its nutrient content. When an individual consumes a diet deficient in micronutrients, and excessive in macronutrients they are more prone to disease.  It’s no surprise that in a culture where calories ingested are higher than ever, and nutrients consumed are lower than ever, that autoimmune illnesses are on the rise.

The LFA and most physicians paint a grim picture for those of us with lupus.  They tell us, “there is no cure, and you will need to stay on medications for life, but the good news is that it is a very controllable disease.”  Good news?  I have better news for those of you with an autoimmune disease.  There is promising evidence that like me, you don’t have to stay on potent medications for the rest of your life.  Nor do you have to live with debilitating symptoms exacerbated by the side effects of medication, such as weight gain, pain, or fatigue.  It is possible to live drug free, to be slim and active, and to live a long, productive life.

I wish I had known this information at the time of my diagnosis.  Those of us with lupus recall scouring the internet, the quest to find a solution, and the disappointment that comes when symptoms flare requiring more medications to be ingested.

Here’s how I deal with my disease NOW:

Settling to live with a lifetime of pain and suffering, while taking ineffective, expensive medications the rest of my life, sugar coated with the appeal to join a purple butterfly band IS NOT an acceptable option for me.  It is nutrition intervention, not medication, which requires true courage and enables all of us to “soar to new heights.”

For more information on lupus:

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