Published Friday, September 23, 2005
Lupus is “the disease with 1,000 faces”. Symptoms vary widely from person to person with this chronic and inflammatory autoimmune disease. The body’s immune system, which would normally defend one’s body against disease and illness, becomes overactive and attacks the healthy tissues of the body. This creates many different symptoms that make it hard to diagnose.
Pat Jones was diagnosed with Lupus in 1984 after seeking help for Pericarditis, an inflammation of the layers of the membrane that surround her heart. Pat was told that her body was attacking itself. Being an active person, and a parent of two teenaged children, Pat wasn’t sure what changes to expect in her life. The medical professionals were not able to offer a lot of help since Lupus was not very well understood. The books at the library that Pat read indicated a short life expectancy. So Pat turned to Lupus B.C., an organization based out of Vancouver that helps to educate, support, and assist those with Lupus.
In partnership with Lupus B.C. Pat decided to create a support group in Maple Ridge for those, like herself, who needed support, friendship, and understanding. Pat is lucky to have the support of her family, including her husband Ron who has not missed a support group meeting in nineteen years, but many others with Lupus do not have support systems to count on, or people in their lives who understand what it is to live with a chronic condition.
Lupus is an invisible disease. Those with Lupus live with the common misperception that they are healthy because “they look fine”. Pat wanted to create an atmosphere of comfort and support for people who wanted to learn to live with this misunderstood disease. She explains the support group as “basically a group that people can come to to realize that they are not abnormal”.
Nineteen years after she started the support group there is more medical understanding of Lupus, and life expectancy has improved, but it is still a disease that is not easy to live with because of the inconstancy. Lupus can attack any of the bodies organs or systems and the person with Lupus is never aware of what might happen next. It is an unstable disease which makes it hard to plan ahead. Pat says that losing the freedom to plan in advance is one of the hardest adjustments. Those with Lupus never know from one day to the next how they might be feeling.
While there are many hard adjustments to living with Lupus, Pat is able to stay focused on the positive, in large part because of the support of friends, family, and the support group that has become a second family to her.
October is National Lupus Awareness Month. In the hopes of raising awareness, as well as funds, Lupus Canada is encouraging people to participate in Walk a Block for Lupus.
Walk a Block has three easy steps: map out a route, collect pledges, and take a stroll. You can walk indoors or outdoors, along streets, trails or even in a mall. You can walk a block or more on one day, or one block for three days – whatever works best for you. Walk a Block for Lupus is flexible for people of all fitness levels. “Celebrate and give thanks that we can walk a block together!”
For more information about the Walk a Block for Lupus or the Lupus Support Group call Pat Jones at (604) 467•9430. The Lupus Support Group meets the third Thursday of each month from 5-7 PM at the Fraserview Village lounge.