She sat in the corner of the waiting room, reading a magazine. I was sure I had seen her before; perhaps last year, or some time in the recent past. You see, she was hard to forget – with strikingly beautiful features, a silent grace about her, and a twinkling laugh that I had heard through a hushed conversation on her cell phone. She was by all accounts unforgettable.
And here she was again, silently flipping through a tabloid, stoically ignoring everyone around her. Although I was positive it was the same girl, something – actually, many little things – were off. She was lighter than before, though she was puffy around the face and midsection. Her glossy hair – still gorgeous and long – was thinning at the crown. A cane rested beside the empty chair next to her. Was this really the same girl?
As the doctor’s secretary called her name, she rose with some difficulty, wincing slightly with effort. And that’s when I noticed the faint rash on her face, the shape of a butterfly, its wings spread across her cheeks. As she grabbed her cane and slowly walked through the office door, I suddenly had a theory.
I was looking at a beautiful young woman with Lupus.
But not everyone can play detective with this devastating disease; lupus often begins with silent, internal symptoms, such as extreme fatigue and pain. And since lupus manifests itself differently from person to person and can be easily confused with other illnesses, patients don’t always seek medical attention and it may take a while from them to get the proper diagnosis when they do.
So how does one speak up about a disease that affects people in unpredictable ways and is a real challenge for even physicians to diagnose?
The best way, of course, is through communication; a public dialogue around lupus to help empower existing patients and help undiagnosed individuals better understand what they might have.
FACTS
Lupus is an autoimmune disease that causes the immune system to turn against the body and attack healthy tissues or organs. It affects people in many different ways and its symptoms are often confused with other illnesses, making diagnosis particularly challenging.
• Lupus affects over one in 1,000 Canadians and is nine times more common in women, often hitting them in the prime of their lives between the ages of 15 and 45.
• Lupus is a life-changing disease. Although symptoms vary greatly for each individual, it can have a debilitating impact on a patient’s quality of life. The cause of lupus is largely unknown, though it is believed to be linked to a combination of genetic and environmental factors.
• Though symptoms can vary greatly from person to person, they commonly include extreme fatigue, unexplained and continuing weight loss, fever, swollen glands and joints, and decreased mobility.
One symptom that can help differentiate lupus is patients often develop a “butterfly rash,” which is a skin lesion that appears in the shape of a butterfly across individuals’ cheeks and nose. Hence, to help fund further research, Lupus Canada has launched the Butterfly Campaign with the goal of raising $50,000.
The aim of the Butterfly Campaign is to virtually release 2,500 butterflies through donated support. For every $25 Canadians donate they will release a single virtual butterfly, and three butterflies will be virtually released for every $50 donated. While the butterfly is significant and one of lupus’ common symptoms is a unique butterfly-like skin rash that appears across the cheeks and nose, a butterfly also signifies beauty, life and hope – and this is a message that Lupus Canada wants to share with all those affected by the disease.
Canadians can make donations to the Butterfly Campaign either online at www.lupuscanada.org, by cheque, or by contacting the Lupus Canada office at 1-800-661-1468.
Today, I released three virtual butterflies for the beautiful girl in my doctor’s waiting room. My goal in publishing this post is to encourage public dialogue – so no one has to suffer in silence. Please help us release 2,500 virtual butterflies to raise $50,000 for those living with Lupus: visit Lupus Canada to donate.
That’s a really moving story. I know someone who has Lupus and it’s had a transformative effect on her :( Thanks for writing this post.
You’re very welcome, Victoria :)
I live with lupus daily, and believe me, it is NOT an easy thing to live with. There are days when I feel like I can do anything, and then the next day I have a major “crash”. You can also forget about planning things in advance. There is no telling from one day to the next how you are going to be feeling. Simple cold ? Not so for me, they can trigger a major flare up. There is an excellent article called “The Spoon Theory” by Christine Miserandino that explains what it is like to live with lupus.
I hope you will allow me to include the link to it here –
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
Thanks Lena for putting this out for all your readers ;)
Thank you so much for sharing your story, Flora xx
Lupus can a very challenging illness and I am glad that awareness is being raised about it.
Thank you Heidi.
I have worked with patients who have Lupus – is it certainly not something that is easy to live with! I am really glad that there are campaigns out there like this to help those who are living with it.
Thanks for your feedback, Soozle :)
I had heard of Lupus, but didn’t know all this about it… how very horrible :(
I hope through research they can find a cure .. thanks Lena for all the information.
Thanks Darlene.
I have always seen the butterfly as a symbol of hopes and dreams. Thanks for sharing this story and information about Lupus. I am sharing this with everyone I know.
Thank you for sharing, Melinda :)
My mother suffers from Lupus and unfortunately is in a wheelchair for life. I also lost a friend in her sleep due to her Lupus and I think it’s wonderful that you wrote a post about this! Great job as always Lena :)
So sorry to hear about your friend and your mom. This is the problem with lupus, it affects everyone so differently and to varying degrees (I have it as well). :)
Thank you for sharing your mother’s story, Jason. Hugs :)
this is a great campaign – thanks for sharing the info!
Thanks Nicky.
Thank you for sharing this Lena. Although I do not have lupus I do have RA which has made many things in my life difficult as well as the fact that a lot of people don’t really know about these auto-immune diseases. I think I will be writing about this on my blog as I feel it is something people need to know more information about.
Thanks for sharing your story, Jessica.
Wow this is a sweet story … Lupus is a scary thing :(
My dearest friend has Lupus and it can be very challenging most days for her now i guess as you age it takes a stronger hole on you.This is a great campaign,thanks for sharing the info!
My wife has lupus now for 3 years ….and it is very hard to watch her struggle but i try my best to help her and i tell her that i love her everyday. and that we will get through this together. sometimes it is very hard to see her in pain and watching her to struggle to walk or just move around…….your story was amazing and it touch home. I am in the progress of making a picnic table with the butterfly lupus symbol for my wife for mothers day……she is truely amazing and i love her very much.