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There once was a woman, who woke up one morning,
Looked in the mirror,
And noticed she had only three hairs on her head.
Well," she said, "I think I'll braid my hair today."
So she did and she had a wonderful day.
The next day she woke up,
Looked in the mirror
And saw that she had only two hairs on her head.
"H-M-M," she said,
"I think I'll part my hair down the middle today."
So she did and she had a grand day.
The next day she woke up,
Looked in the mirror and noticed that she had only one hair on her head.
"Well," she said,
"Today I'm going to wear my hair in a pony tail."
So she did and she had a fun, fun day.
The next day she woke up,
Looked in the mirror and noticed that there wasn't a single hair on her head.
"YEA!" she exclaimed,
"I don't have to fix my hair today!"
Attitude is everything.
Be kinder than necessary,
for everyone you meet is fighting some kind of battle.
Live simply,
Love generously,
Care deeply,
Speak kindly.
Life isn't about waiting for the storm to pass...
It's about learning to dance in the rain.
Importance of Medical Research
The Lupus Foundation of America (LFA) is the leading national organization focused solely on serving the needs of the 1.5 million Americans affected by lupus. When you consider that lupus affects the entire family, not just the individual with the disease, the LFA works to address the needs of nearly 10 million Americans who are affected by lupus.
At present, there is no cure for lupus. Some of the current therapies for lupus are toxic and can cause other health problems from long-term use. The U.S Food and Drug Administration (FDA) has not approved a new medications specifically for lupus in more than 40 years. More research is needed to identify a cause for lupus, develop more safe and effective treatments and, ultimately, find a cure for the disease.
LFA Leadership in Research
The Lupus Foundation of America is leading the national effort to find the cure for this widespread, devastating and potentially life-threatening disease. The LFA seeks to stimulate both public and private investment in lupus research, as well as support its own research program.
New Lupus Research Initiative
The Lupus Foundation of America has launched a new initiative aimed at bringing down the barriers that have obstructed progress on research into lupus. The Five-Year Research Support Program seeks to advance biomedical, clinical, epidemiological, behavioral and translational research that will lead to safe and more effective treatments for lupus and a cure for the disease. The program will help accelerate the pace of medical discovery in lupus with a goal of making clinical trails more feasible.
Funding for Lupus Research
Research funded by the LFA national office is made possible by generous contributions from individuals, foundations, and corporations, and through financial support provided by LFA chapters and their members. Additional contributions will allow the LFA to expand the scope and size of the studies it can support. You can donate to the LFA online here.
The LFA also works with the pharmaceutical industry and federal agencies to stimulate additional private and public investment in basic and clinical research, clinical trials, and development of new therapies for lupus.
During Fiscal Year 2005, the National Institutes of Health allocated $88 million for lupus-related research. Private industry provided an estimated $30 million. Nonprofit organizations and foundations, such as the LFA, provided an estimated $10 million. This level of funding still is insufficient to support all of the promising studies that seek to identify a cause and cure for lupus. Finding the cure will take hundreds of millions of dollars. We must continue to support efforts to increase funding for lupus medical research from all sources.
You are invited to join the Lupus Foundation of America in Washington, D.C. for our 2008 Lupus Advocacy Day!
Our two-day 2008 Lupus Advocacy Program will commence on March 10th with a training session and dinner at the Westin Alexandria Hotel to discuss how to make the most of your meetings with your Members of Congress. On Tuesday, March 11th, the LFA, as well as chapter representatives, lupus physicians and researchers, and other advocates will travel to Capitol Hill to meet with Members of Congress and inform them about how debilitating lupus can be.
The LFA needs you and your friends and family members to visit your federal Representatives and Senators to urge them to support more funding for lupus research and education.
Register now at http://www.lupus.org/newsite/pages/2008AdvocacyDayRegistration.htm
The registration fee for Lupus Advocacy Day is $35 per person, which includes dinner on March 10th and breakfast on March 11th. The room rate for the Westin Alexandria Hotel is $229 per night.
If you have any questions, please contact Sara Chang at chang@lupus.org or by phone at 202-349-1169.
Hi, and welcome to Living Lupie! This is a site I am using to share my experiences about dealing with lupus in hopes of helping others deal with lupus. I hope this helps you in some way.
On this site, you will find links to helpful lupus information and a blog about my lupie life. Feel free to send comments to me at Lupie Mail.
My Blog
In this blog, I discuss my daily lupus issues, such as, how I deal with the pain, adjust to the changes to my skin and hair, and whatever else I do that's lupus related. Click here for my Living Lupie Blog.
Lupie Book Reviews
I just added a link for books on lupus. I'll update this list often, so keep checking back. Click the link for Lupie Book Reviews.
Lupie Music
With lupus, your mood often affects your health. I've put together a list of songs to help perk up your mood and make you feel like dancing!
You have lupus? Funny, you don't look sick?
If you suffer from lupus, odds are you have had someone say this to you. In many cases, people with lupus don’t look really sick, but they feel sick. People often say to me, "I'd never guess. You look great." I usually reply, "Thanks. My body is mostly ornamental." If you have lupus, you may possibly feel achy, have a low-grade fever, swollen joints, a rash, plus a myriad of other symptoms. If you have just been diagnosed with lupus, it is also likely that you’ve been feeling sick for a while because the average lupus sufferer experiences symptoms for five years before he or she is actually diagnosed.
What is lupus?
Lupus is an autoimmune disease. This means that the immune system is attacking the body itself instead of a virus or infection. When this happens, a person with lupus can experience inflammation and cell and tissue damage. Click here to read more
Lupie Grab Bag
Okay, I've found some interesting lupie facts and news, and I didn't know where to put them, so I came up with Lupie Grab Bag.
Lastly
I'm not a doctor. I'm just a woman dealing with lupus and sharing information and experience. If you want advice on treatment and diagnosis, it is best to get that from a doctor experienced in dealing with lupus, such as a rheumatologist.
Katerina Canyon -- Living Lupie
Monday, December 10th Is The Last Day To Place Your Orders For Christmas Delivery!
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YEAH KENDRA! Our very own cure4lupus organizer has put together a walk in Iowa and had an article written about it below! YOU GO GIRL! hugs,
Jayne
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Kendra Isola, 29, of Urbandale helped organize the Iowa Walk for Lupus Now, scheduled for today at Gray's Lake. The goal is to raise $40,000 for lupus research. Isola has dealt with depression related to lupus, a disease affecting the immune system. Get involved
WHEN: The first Iowa Walk for Lupus Now is from 9 a.m. to noon today at Gray's Lake, 1400 Fleur Drive in Des Moines.
COST: There is no cost to walk but donations will be accepted. Donors who give $50 or more will receive a T-shirt.
DETAILS: Organizers with the Iowa chapter of the Lupus Foundation of America hope the event can be an annual one. For more information, go to lupusia.walk.kintera.org.
Woman fights lupus, sets up fundraiser
She says her role in today's walk gives her purpose
By GUNNAR OLSON
REGISTER STAFF WRITER
It took two years of deep depression and a move home to Iowa before Kendra Isola figured out who she was.
She was never going to be the mother and business owner she struggled to become while living in Florida. Lupus - which turns the immune system against its own body, attacking its healthy cells - had rendered her physically unable. Her joints hurt so badly that getting through the day felt like running a marathon.
"I had this image of myself of who I should be - healthy, strong, working hard," she said. "And I couldn't reconcile that I wasn't that person. I didn't like who I was."
Two years after moving back to the Des Moines area for better health care and to be closer to her family, Isola is excited about her new life as an advocate for fighting lupus.
Isola, now 29, is one of the organizers of the first Iowa Walk for Lupus Now, to be held from 9 a.m. to noon today at Gray's Lake in Des Moines.
Organizers with the Iowa chapter of the Lupus Foundation of America are aiming to raise $40,000 for research for a cure to lupus. They hope the event will be an annual one.
An estimated 1.5 million Americans live with some form of lupus, which is difficult to diagnose and sometimes fatal, according to the Lupus Foundation of America.
The federal Food and Drug Administration has not approved a new drug to treat lupus specifically in 30 years, according to the foundation.
"We have so much hope on the horizon," Isola said. "We can have a cure - or at least better treatment - soon."
Sara Webster, a Sheldahl resident who also has lupus, said she quickly came to admire Isola while working with her to organize the lupus walk.
"Her life has gone in a different direction," she said. "Her life has changed and she's accepted it and she's doing it for the greater good."
It was in Florida about four years ago that Isola had nearly built the life she always wanted. She was recently married, was starting a career selling real estate, and was looking forward to raising a family.
Having lupus was something she just dealt with - she had done that since first showing symptoms at 13.
Then she started missing meetings with clients and quit her job. She learned she couldn't have kids.
Isola fell into a depression that would last two years. She stayed at home and watched 12 or more hours of television every day, sleeping the rest of the time, always exhausted.
Her husband was supportive, but her state wore on him visibly, and that depressed her further. They spent thousands on her medications.
They evacuated their home for Hurricane Wilma in 2005, and she made up her mind then that she wouldn't return.
Sitting in the Urbandale duplex she now shares with her husband and father, Isola recalled her slow ascent from depression once she arrived in Iowa two years ago. She said she still spends a lot of time sleeping and in front of the TV.
Being around family helped, she said, but it was launching a Web site, www.cure4lupus.org, that ultimately pulled her out of depression. Sharing her story, letting others with lupus know they are not alone, has given her purpose.
Six months after launching her site, she created a page on MySpace.com, the social networking site, and within weeks she started receiving e-mails by the hundreds from people like her. "Once I found this way to reach out to people and make a real different, I started liking who I was becoming," she said.
Reporter Gunnar Olson can be reached at (515) 284-8039 or golson@dmreg.com
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