Awareness and Action with The Arthritis Foundation
Meet Amelia and Liberty Shultz. They are four and two and half years old and are this year's National Arthritis Walk youth honorees, selected to represent the 300,000 kids in the US who live with juvenile arthritis
Amelia was diagnosed at 23 months and Liberty at 13 months. Both are on weekly doses of Enbrel and methotrexate and although the medication is working, they are not in remission. They are too young to quite understand what arthritis is, but not the reality of having bad days. Because they are so young, their mother, Lisa Shultz explains that "they have never had a day without pain." On really bad days, there are lots of cuddles, warm bath and the girls' six-year-old brother Zander helps distract them from the pain.
Juvenile arthritis has changed the life of this young family. They moved to a different city to be closer to Amelia and Liberty's rheumatologist and their everyday life is deeply affected by taking care of two children with arthritis. Because of the girls' suppressed immune systems, they "have to constantly think about germs." Lisa keeps the house as clean as possible, wipes down the cart in the grocery store before using it and tries to keep the girls, Liberty, especially, away from other children.
"We are grateful for The Arthritis Foundation," Lisa says, "it has allowed us to network with other families and go to a kids' camp in the summer." The whole family is very involved in raising awareness about juvenile arthritis. Zander likes wearing his arthritis T-shirt and the parents do speaking engagements. Amelia and Liberty are also involved. Dressed in their pink tutus, the girls love to go out with their parents to hand out information about arthritis and participate in Arthritis Walks. Lisa says that they are "thankful to everyone who walks and raises money to find a cure for arthritis."
Awareness and Action
This year, The Arthritis Foundation has renamed May to be Arthritis Action Month. Dr. Patience White, VP of Public Health for the Foundation, explains that they want "to attack the fundamental myths about arthritis. That arthritis is not just part of aging, something you have to accept." To fight the myths, the Foundation calls for us to take action for ourselves and others.
"Take action where you see fit," Dr. White says, "found an Arthritis Walk Team, take a physical activity class, make an arthritis resolution." Action can include a range of activities from the personal, such as taking action to get a diagnosis or finding ways to be more physically active. Dr. White also suggested other ways of taking action, including helping someone who has one of the more than 100 different types of arthritis or advocating with different levels of government. You can get involved with The Arthritis Foundation as an advocate or ambassador for arthritis.
The Arthritis Foundation has two especially exciting initiatives this month. To help you take action in your everyday, the A-Z Action Zone will post a daily suggestion with the "ABCs and 123s of arthritis."
The Foundation is also working with your elected representatives to make change. They are supporting a bipartisan Patients' Access to Treatments Act of 2012 introduced by Rep. David McKinley (R-WV) and Rep. Lois Capps (D-CA). The goal of this bill is to limit co-payment or other cost-sharing requirements by insurance companies that limit access to specialty medications, such as the Biologics. These kinds of cost-sharing arrangements often make it impossible for people to afford treatment for their RA. You can help by asking your member of Congress to support this bill.
Walking for Arthritis
The money that helps Amelia and Liberty's family, as well as many other people living with arthritis come from the Arthritis Walks held all over the country.
Dr. White explains that the Walks have a threefold goal: "to raise awareness, to raise funds and to provide the physical activity that is so important for people with arthritis." Each Walk is organized by regional chapters. They are designed "to be reasonable for people with arthritis," Dr. White says. The emphasis is on a fun activity that can help the whole family, including dogs and kids, get moving. You have the option of a short or longer distance depending on your ability level and some people traveled the distance in scooters and wheelchairs.
The goal for 2012 is to raise $12 million. The money raised goes to Foundation programs to help people with arthritis get better quality of life and to research. The Arthritis Foundation is the largest not-for-profit funder of researchers and academic centers that are working to find a cure.
If you want to get involved in one of the more than 200 Walks happening across the US, get your friends and colleagues involved to create a team, go to The Arthritis Foundation website's Walk section and sign up.
Don't forget to enter our amazing arthritis awareness contest by May 31, 2012!
Lene is the author of the award-winning blog The Seated View