E-wareness: Lupus

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LUPUS

(May 2015)

 

Campaign Coordinator: Brenda Bradford

 

BRENDA’S MESSAGE:

June 30, 1999.  There are some dates that one never forgets, this is one of those dates for me. I had been sick for more than two weeks. Muscle and joint pains like I’d never experienced before, mouth sores, pleurisy, edema, weird bruising for no apparent reason… each day seemed to bring on new symptoms.

It was June 13, 1999 when I first realized something strange was happening to my body. Very odd considering I rarely got sick and I was at the healthiest I had ever been in my adult life. Finally on June 18, 1999 I went to urgent care. Tests were run, a preliminary diagnosis of rheumatoid arthritis was given, a pain reliever was prescribed, and an appointment to come back in a week for a follow up.

Over the next week or so, more symptoms popped up, more tests were run, and finally on June 30, 1999 the rheumatologist gave me the official diagnosis: Systemic Lupus Erythematosus.

Lupus is an autoimmune disease that can affect various parts of the body, including the skinjointsheartlungsblood, kidneys, and brain. Normally, the body’s immune system makes proteins called antibodies to protect the body against virusesbacteria, and other foreign materials.

In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself.

My hope is that this month’s E-wareness campaign, which coincides with Lupus Awareness Month, will help shed light on this often misunderstood illness.

 

LINKS TO IMPORTANT ONLINE INFORMATION:

Lots of great information about lupus can be found at the Lupus Foundation of America’s website: www.lupus.org

For our friends in the UK: http://www.lupus.org.uk

Lupus LA provides a number of patient services to the lupus community in the greater Los Angeles area, including support groups, doctor referrals, emergency grants, patient education and resources, and a newly diagnosed patient guide. http://lupusla.org/patient-services/

The Alliance for Lupus Research is the world’s largest private funder of lupus research, committing almost $100M to date. We aim to find better treatments and ultimately prevent and cure systemic lupus by supporting bio-medical research. http://www.lupusresearch.org

The Arthritis Foundation of America provides a wealth of easy to read information about lupus. http://www.arthritis.org/about-arthritis/types/lupus/

Lupus is one of the cruelest, most mysterious diseases on Earth. Lupus strikes without warning, has unpredictable, sometimes fatal effects, lasts a lifetime, and has no known cause and no known cure. Learn more about what the Lupus Foundation is doing to help solve this cruel mystery. http://cruelmystery.org

Our pets can get lupus, too.
http://www.petwave.com/Cats/Health/Lupus.aspx
http://www.petwave.com/Dogs/Health/Lupus/Symptoms.aspx

Did you know that The Beatles’ song “Lucy In The Sky With Diamonds” was inspired by Julian Lennon’s childhood friend, Lucy Vodden? Lucy lost her battle with lupus in 2009. Since then Julian has become an ambassador for lupus research and has written and recorded a song, “Lucy”, with a portion of sales earmarked for lupus research, shared by the Lupus Foundation of America (LFA) and the St. Thomas’ Lupus Trust in Great Britain, where Vodden was treated. You can read his story here: http://www.webmd.com/lupus/features/julian-lennon-sings-a-new-song-for-lupus and listen to the song here: http://www.youtube.com/watch?v=F202i8Qx_Oo

GUEST SPEAKER:

Lupus is often called a cruel mystery. It strikes without warning, has unpredictable, sometimes fatal effects, lasts a lifetime, and has no known cause and no known cure.

There’s more to lupus than meets the eye, it is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is hidden from view because people often times may not look sick. It is more pervasive than people think, and strikes on a scale that the public does not realize.

Lupus has many different symptoms, and, because of that, affects each person differently. Lupus can cause a mild skin rash or achy joints, or can involve the kidneys, heart, lungs, brain, or other internal organs.

This week’s program provides a first hand look at Lupus – stories from those who suffer from this “cruel mystery” as well as medical information from Ann Parke, MBB MD FACR and John M.A. Nascimento, MD FACP FACR.

Brought to you in partnership by The Lupus Foundation of America CT Chapter and Steven Roberge of NameBreaker Productions.

If the embedded video does not work, please click here to view it on YouTube.

FOR THE FUTURE:

If you think you have lupus: Know you are not alone and that you are not crazy. What’s going on inside your body is real. It can sometimes take many years to get a positive diagnosis. Go to a rheumatologist rather than a primary care physician. You can get a referral from your local chapter of the Lupus Foundation of America.

If you have lupus: Find your balance. Enjoy the good days as best as you can and rest on the bad days. Don’t push yourself to please others and never feel guilty when you need to rest. Find a support group in your area. Educate your family and friends. Take your medication and use lots of sunscreen.

If you know someone who has lupus: Educate yourself. Know that just because someone doesn’t appear to be sick doesn’t mean they are not in pain. Be supportive.

And for everyone, help us find a cure:

The Alliance for Lupus Research is the world’s largest private funder of lupus research.

The Lupus Foundation of America is a leader in lupus research and provides grants, fellowships, and awards to those working towards finding a cure.

Both of these organizations hold fundraising walks throughout the US.

Recommended reading: The Lupus Book by Dr. Daniel Wallace.

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THE ROTARY E-CLUB OF THE GREATER SAN FERNANDO VALLEY asks you take a look at more of our website, especially the PROJECTS tab, and invites local visitors to contact us for more information about joining our fun, active, flexible team.

The opinions expressed by guest speakers are those of the speaker(s) and not necessarily of the Rotary E-Club of The Greater San Fernando Valley or its members. No endorsement is implied. Programs are presented for informational purposes only.

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4 responses to E-wareness: Lupus

  1. You have already opened my eyes, Brenda. I have known others with Lupus, but never understood so clearly how extensive its effects can be. I look forward to learning more about this insidious disease in the coming weeks.

  2. The worst part is the misdiagnosis part of the process. Not only can it delay proper treatment but also leads to much unnecessary pain and sometimes death. Sorry you went through that. The worst

  3. Yoko said on May 31, 2015

    I strongly hope our small effort to spread the words about Lupus will bring us a step closer to the cure.

  4. Thank you, Rotary E-Club of the Greater San Fernando Valley, for giving me this opportunity to raise awareness for lupus and to help educate people to this misunderstood disease.

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