One Patient's Positive Perspectives

New Lupus Symptoms Initiative

Photo by Lupus Adventurer © 2013The Lupus Foundation of America and GlaxoSmithKline (GSK)  have partnered in an exciting new lupus awareness campaign using the slogan, “it’s time to unmask all your lupus symptoms.”  I first noticed information about this on the LFA Facebook Page.

Some outstanding new patient-focused resources are available at http://www.lupuscheck.com/index.html to help  encourage patients to share all their symptoms with their doctors.

Here is a sample of discussion readers will find on this new awareness site:

“With systemic lupus erythematosus (lupus), symptoms that may not feel like your lupus can be important, too. Some may even indicate organ damage.”

Resources include links to a TV commercial, a form for patients to use in tracking and communicating symptoms with their doctors, and a link to sign up for a free lupus journal.  The journal request process asks for contact information, mailing address and a few basic survey questions GSK can use for statistical reporting.

Great new resources:

Commercial on YouTube:

PDF Form and checklist for tracking lupus symptoms:

http://www.lupuscheck.com/pdf/The_Lupus_Checklist.pdf

Link to complete survey and ask for a free lupus journal:

https://www.lupuscheck.com/registration.html

Other resources:

The site also includes information about two other important areas of emphasis important to lupus patients: the patient experience in communicating with caregivers and family (including important results of a related survey,) and listening to your body to notice possible symptoms.

Two more excellent resource pages cite important statistics and summarize information reported from a recent survey:

“Data from the 2011 National Burden of Lupus survey funded and developed by Human Genome Sciences and GlaxoSmithKline. This survey included 957 people in the lupus community—502 people who reported being diagnosed with SLE, 204 supporters (family members or friends) of people with lupus and 251 rheumatologists. Data on file, GlaxoSmithKline, 2011.”

http://www.lupuscheck.com/the-patient-experience.html

52% of patients with lupus report they minimize their symptoms when they talk to their physicians.

72% of physicians are unaware that patients tend to under-report their symptoms.

http://www.lupuscheck.com/listen-to-your-body.html

87% of people with lupus say they downplay symptoms to avoid upsetting their families.

More about this campaign

Go to the Lupus Foundation of America website or see the LFA Facebook page for more discussion and to show that you “like” this joint LFA/GSK effort.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=5105&zoneid=99

https://www.facebook.com/LupusFoundationofAmerica

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Comments on: "Unmasking All Lupus Symptoms – New LFA & GSK Campaign" (6)

  1. … [Trackback]

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  2. […] 4. Unmasking All Lupus Symptoms – New LFA & GSK Campaign – July 9, 2013 – 3,773 views […]

  3. Very eye opening video, and I am really glad to hear that the Lupus Foundation is doing this. Do you know if this commercial is going to be aired nationally? Well, I am guessing based on some of the comments here that they are going to be playing it on some major networks. Hope I get to see it aired!!

  4. I find this very interesting… but don’t think that lupus patients are alone when masking and minimizing to their doctors and families. Women tend to put the needs of others in front of their own needs and even bodily hurts. Maybe this will spark the thought for those suffering with even other health issues not to do that in the doctor’s office. You can’t wonder why you’re not getting the help you need if you’re not being honest! Thanks LA for another great post.

  5. Hi LA! I shared your blog at my new fb group here: https://www.facebook.com/groups/lupusvideochannel/ I saw their first new commercial on foxnews last night! YIPPPPEEEEE! I love the new “masked” theme for lupus! HUGS< Julie

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