Sometimes It Is Lupus

By now, many of my readers should be aware that I have lupus. Affecting 5 million people worldwide, lupus is a hugely misunderstood and debilitating disease. For quite some time, I have been doing what I can do to raise awareness and funds for much needed research into the treatment and cure for lupus. This has included writing a book and selling merch where partial proceeds are donated to the B.C. Lupus Society and the funds are earmarked for treatment and research. It has been 51 years since there has been any new medications approved to treat this potentially fatal disease and to this date, not a single medication specifically for the treatment of Lupus. Medications currently used for treatment are those found accidentally which are meant to treat other disease.

My battle with lupus has been a very tough one. Lupus has attacked my body in such a way where I was required to have a hysterectomy at the age of 29 and suffered a stroke at the age of 30 after years of TIAs which began when I was 19. I have had chest and lung inflammation, both liver and kidney problems and a long list of other health issues as a result of this disease. I have also lost someone very close to me as a result of the complications associated with lupus. It is why I have decided to try and do something big-ish for World Lupus Day (May 10) and I need as much help as possible to make it as grand as possible. My aim this time is not to raise funds (even so it is greatly necessary) but to raise awareness. Until people become more aware of what this disease is outside of some catchphrase on a popular television show, people will be less likely to help provide funds for much needed treatment and research. As a result http://lupus.juliasherred.com was created.

What is this project? Well, I am glad you asked. Let me use my handy dandy keyboard to copy and paste what I have included on the above site:

Welcome to World Lupus Day: A Virtual Gallery To Bring Awareness To Lupus.

Hi, my name is Julia “Jules” Sherred and I have Lupus. Some of you may already be familiar with my story and others may not.

My story is long and it has been a difficult one. This may be one of the only things I may be able to say that will link my story to all others who live with this disease. Lupus has a thousand faces and often times this makes it difficult to adequately explain what exactly Lupus is. Many people have no idea what Lupus is or how it works. Sure they hear the phrase thrown around as some sort of catchphrase or meme but many remain unaware of what Lupus is outside of hearing in on some television program. Even the medical profession is still trying to find some much needed answers in an effort to unravel the mystery of this disease. And this is one of the reasons I decided to create this site.

One night I was sitting and thinking of possible ways to do something grand in honour of World Lupus Day. I wanted to do something big-ish. Something, regardless of where someone lived, they could participate. The only concrete idea I had was that I wanted it to have a heavy butterfly theme. Of course, other motifs and themes are more than welcome. I wanted to gather art, music, crafting, videos, stories, poems, anything anybody could think of to bring even a little bit more awareness to this disease outside of some catchphrase. Something artsy and multimedia. Something in which anyone can collaborate and contribute to despite their talents. I blogged about it and for some reason I didn’t think it would go far. In less than 24 hours, I had some amazing responses and was given many ideas that would enable me to put this “thing” into motion.

Below, you will find links to many ways in which you can help. You can choose to jump on board an existing project or if there is not a project already listed that you feel would be a good one, there is also a link to suggest new projects. I ask that all projects be completed by May 8th and any associated media (pictures, videos, stories, poems, etc.) be sent to me by Midnight PDT on that same date. That will give me 2 sleepless days rearranging the site so that it may become a virtual art gallery dedicated to Lupus, Lupus awareness and above all, dedicated to every person affected by this disease whether a sufferer or family member. Then on May 10 at 12 am PDT, the transformation from caterpillar to butterfly will be complete and all of our efforts can flutter out to the world.

In order to make this as successful as possible, I have created a Facebook event. Please invite every one that you know. As well, please pass on this URL to as many people as possible to make this event as big-ish as possible. If you have any questions or if you have media to send me for this project, please email me here.

Projects already underway are: Create A Song, 1000 Paper Butterflies, Share Your Story, Butterfly Curtains, Lucy In The Sky With Diamonds, Write A Poem, Create A Video, Butterfly Kisses, and Lupus Across The Web. If you have a project that you think would be a good idea, you can suggest them here.

I want to thank everyone who has already come on board another one of my crazy ideas. It would not at all be possible without everyone’s help and support. I also want to give a special thank you to the Lupus Foundation of America for their support and endorsement of this project.

About the Author

Jules

I never know what to say in this about me sections/bios. I am a mother, geek, gamer, tech enthusiast, radio personality, actor, artist, dancer, crafter, writer, music fanatic, science fiction nut, lover of the great outdoors, and so much more.