People Of European Of African American Descent May Be A Great Risk For Lupus
Lupus nephritis is more common in people of European or African-American descent with two specific genes according to research just published by David W. Powell, PhD, of the University of Louisville, and colleagues in the online edition of the Journal of the American Society of Nephrology. About half of all lupus patients develop lupus nephritis. The varied incidence rates of the condition between ethnic groups suggests genes may play a role.
Vote for LC in Citywide Banks’ Charity Hand-Up Contest
LUPUS FOUNDATION OF COLORADO is one of seven local charities nominated in Citywide Banks’ Charity Hand-Up Contest taking place October 1-14, 2013. The Denver/Boulder community is invited to vote for a nominee and enter prize drawings. The charity receiving the most contest votes will receive a $5,000 donation, while the other nominees will split $2,500 in donations based on the voting results.
It’s difficult to diagnose and is often mistaken for other autoimmune diseases. It’s challenging to manage because it’s hard to predict how it will manifest. And, to date, there is no cure for the 20,000 people in Colorado and over 1 million Americans who currently suffer from the disease, the vast majority women.
That’s why the Lupus Colorado (LC) was founded in 1972. The nonprofit’s mission is simply to be the very best resource for people in Colorado suffering from Lupus, and their families.
Founded by a group of women who were concerned about the lack of resources and information available in Colorado for people with Lupus, and who also sought support from others who were going through what they were going through, the LFC started off simply by distributing pamphlets of information. Now, 40 years later, they provide high quality and technologically advanced information through their website and webinars, dedicated outreach and advocacy, and financial support to anyone in Colorado who suffers from Lupus, and their families.
“We recently added the emergency assistance component because sometimes people just find themselves caught in a trap for which there is no other assistance,” explained Debbie Lynch, CEO of Lupus Colorado. “Sometimes we help with a co-pay or money to buy groceries, or dental work or eye glasses because Lupus has impacted their teeth or eyes in some fashion.”
LC is also a strong supporter of innovative research and fundraising for the Lupus Research Initiative. The initiative funds many research projects being conducted locally at the University of Colorado Hospital and National Jewish Health Center. And it administers an Energy Outreach Colorado grant to help clients pay their utilities in time of need.
With Lupus, of which there is no known cause, the immune system mistakenly attacks healthy tissue and can affect almost any organ in the body, such as skin, joints, kidneys, brain, and the pancreas. Symptoms, which include sun sensitivity, rashes, fever, fatigue, and muscle and joint pain, can range from mild to severe, but still 20,000 Americans die of Lupus related complications every year.
“It’s often called the great masquerader because it looks like other autoimmune disease such as rheumatoid arthritis, thus the reason it’s so hard to diagnose,” explained Lynch.
Although there is no known cure, progress has been made in medicines and lifestyle changes that can help minimize “flare ups” and improve quality of life. One of the biggest areas of progress is earlier detection due to new tools and research.
To help LC, Lynch says they host events that you can participate in and/or volunteer. But, a lot of their fundraising efforts are focused on individual giving. “New events are hard to grow and we’re a small organization,” explained Lynch. “But anyone can make a financial contribution in honor or memory of someone. They can designate it to research, or the emergency assistance program.” They’re also always looking for volunteers or new ideas to help promote the organization.
A $5,000 donation from Citywide Banks would go toward expanding LC’s children’s network, since they’ve seen a growing number of young people diagnosed with the disease, which, in the past, has usually first affected women during childbearing years. The rest of the donation would go into their emergency assistance fund.
“Kids suffering from Lupus are often very isolated,” commented Lynch. “They experience physical changes due to the medication and they need a different type of support as well as a peer network.”
For more information on ways to donate your time or money, please visit www.LupusColorado.org.
Vote to Give Lupus Foundation a $5,000 Hand-Up As a Colorado owned bank focused entirely on the Front Range, Citywide Banks shares a commitment to our local community with the Lupus Colorado. Through our Charity Hand-Up Contest, we are proud to spotlight the great work and ongoing needs of local nonprofits. Based on the results of a 14-day Facebook vote, the local community will determine how $7,500 is split among seven Colorado charities nominated by Citywide Banks employees. The charity receiving the most votes will receive $5,000 and the runner-up will receive $1,000. The remaining donation amounts will correspond to the voting results for each nominated charity. The voting public can also enter to win great prizes, including dinner for two at one of Denver’s top restaurants. Official prize drawing rules are available by clicking here. Full contest details are at www.CitywideBanks.com/charity/.
How to Cast Your Vote – October 1-14 The contest is open to the general public within the Denver/Boulder community (non-customers welcome to participate; no purchase necessary). The easiest way to vote is online by clicking the “Charity Contest” tab on the Citywide Banks Facebook page at www.Facebook.com/citywidebanks. Users will need to “like” the bank’s Facebook page to cast a vote and enter prize drawing online. One vote/entry is permitted during the 14-day contest. After voting on Facebook, users can use the sharing buttons to easily invite their Facebook friends to vote for their favorite charity.
Insurance Marketplace Opening
Starting Oct. 1, Connect for Health Colorado will open for business, offering Coloradans a new way to shop, compare and select new health insurance plans that will begin providing coverage as early as January 1.
Consumers can go online to learn about options. You’ll have a wide range of choices at competitive prices. You can compare health plan features and prices side-by-side, identify your potential cost savings based on income, and sign up for health plans. Small business owners will be able to set up group plans for their employees. Brokers, agents, Health Coverage Guides and the Customer Service Center are all available to help guide you through the process at no charge.
Many Coloradans will be eligible, based on income, for new cost savings – primarily through a new kind of tax credit from the federal government – to reduce the cost of private health insurance. Many Coloradans will also be newly eligible for Medicaid in 2014 because of a new state law that expands eligibility based on income.
You can buy health insurance through our Marketplace and then claim the tax credit, if eligible, when you file taxes in 2015. The IRS will determine the amount of the tax credit and apply it to a refund or lower tax liability.
If you want to apply for an advance premium tax credit (applied immediately to lower the monthly premium), you’ll need to work with our Customer Service Center to apply. Advance tax credits are only available to customers who have been denied Medicaid, so the first step is to fill out an application for Medicaid. The application can be done online, over the phone, on paper, or supported by our trained representatives. Once you are denied Medicaid, we’ll ask you some additional questions about your tax household and anticipated income to determine eligibility for tax credits. In November, we anticipate that customers who want to move through the process without the help of our support network will be able to do so by themselves.
We’ll offer many resources – including a mobile application – to help you explore your options. You can call our Customer Service Center, go to an Assistance Site in your community, or get advice from a certified agent or broker. We’ll support you through each step in the process to make sure you’ve completed enrollment by December 15 to have your coverage start January 1, 2014. And Coloradans who miss that window will have up to the end of March 2014 to shop and enroll. We’re excited to offer this service to help you protect your health and your finances. Learn more on our website or at 1-855-PLANS-4-YOU (855-752-6749).
Lupus pick-up service makes a difference
Looking for a Halloween costume that no one else has? Or need to add a few pieces to your wardrobe for fall? Check out Unique and Savers Thrift Stores.
By doing so, not only are you saving yourself a few bucks, but you are also contributing to the success of the Lupus Colorado Pick-Up Service. You donate your unwanted clothes, household goods, etc., and arrange for a pick-up. The van comes on the scheduled day and transports your goods to a Savers and Unique warehouse.
“We pay our nonprofit alliances based on the number of boxes and bags of merchandise they’ve collected from you and then deliver to us. In the same way, we also pay our nonprofit alliances every time you donate gently used goods directly at our stores via Community Donation Centers,” said Ken Alterman, president and CEO of Savers, a nationwide company.
Savers was founded in 1954 on principles such as giving back and providing opportunities. When consumers shop at Savers, you help support many local community programs.
“Our nonprofit alliances drop off thousands of items every day so no two shopping trips are ever the same,” Alterman said. “Our incredible inventory comprises unique, quality used goods as well as new merchandise, including closeouts on great items not found at other thrift stores.”
Lupus Colorado Executive Director Debbie Lynch values the partnership with Savers and appreciates people calling Lupus Colorado for a pick up.
“We can count on a check from Savers every month,” she said. “This money is used for lupus research, to help those suffering with lupus who have financial hardship and to strengthen are youth outreach. Donating your used goods is so beneficial in so many ways!”
Timelines Tell All
By Sandra Kanowitz, MSN
Remember the TV show “Without a Trace” from a couple of seasons back? I loved that show, and was always intrigued when they created the timeline of the crime (disappearance of subject) and kept it going as new clues surfaced.
Since health problems such as lupus are so complex, I thought of using a timeline to keep track of symptoms, labs, tests, treatments, side effects, etc. I have now kept one for a month, and have been amazed at the results. Since lupus affects my memory, it has kept better track of which came first, the new drug or the new symptom (a side effect?) It has given me clarity on some issues that were muddied and confusing.
It has been simple, quick, and worth its weight in gold.
If you want to try keeping a timeline, start with a simple form either on old fashioned notebook paper or on a computer spreadsheet, like Excel. Here’s how:
On a notebook page with lines or spreadsheet, number the rows 1-31 down the left of page, one for each day of month. Across the top row, make 5 vertical columns: Signs/Symptoms, Med. Changes, Activities/Stresses, Environment, and Associations. You could add a diet or exercise column if you are working with those modifications. Print the gridlines if printing a spreadsheet on which to hand write.
Every day (takes a minute or two), fill in the columns with anything pertinent. The idea is to start looking for patterns, trends, and associations between the factors. For example, on cold, rainy days do you hurt worse? On cloudy days, do you feel more depressed? Did you develop a new unusual symptoms right after starting a new medication? Did changing the dose of a med produce any effects? Did sun exposure make you feel worse the next day? These are all obvious examples, but more subtle ones may emerge.
It is hard to remember how you felt two weeks ago. It is sometimes impossible to remember the chronological order of some events when everything seems to change every day. Having it on paper will undoubtedly give you some AHA! moments, and allow you to make adjustments that will help you feel better.
Managing lupus is a complex, dynamic process that involves frequent changes, ups and downs, and parts that are forever in motion. Anything that allows us to accurately record these factors can help in our care. Our timeline can even be used for documentation in our medical record, to show frequency and severity of symptoms, responses to treatment, correlation between symptoms and labs, etc.
I would encourage everyone to start a timeline and keep it for at least a month. I’m sure you’ll be hooked and amazed at its simplicity and usefulness. Of course, it should be personalized to suit your needs. If you need more columns, try the landscape orientation so it all fits on one page.
Simplicity and brevity are keys to keeping it going. I would be very interested in feedback from those of you who try this idea. The beginning of October is a perfect time to start!
In Memory of Ina Clark Ramona and John Richers
In Memory of Eldred Rowe Sylvia Schneider Lina Sharp
In Memory of John Sayers Frances Bartmann Mr. and Mrs. Thomas Boucher Kathy Cole Louise Collins Daryl Smith Harold and Shirley Wheeler Ann Young
In Memory of Kris Wenzel Patricia Buys Pamela Kurth Michele Lueck Debbie Lynch Stanley Rabe Community Health Partnership RIHEL – Regional Institute for Health and Environmental Leadership Staff