5 June 2013

’71 VW camper van helps create awareness of autoimmune disease

Carole Brown’s 1971 Volkswagen camper van drew so much attention during a 7-month trip from Oregon to Massachusetts four years ago that she decided to make another cross-country jaunt to California, with a higher purpose in mind. So in 2012, the native of England drove nearly 8,000 miles through 19 states to bring attention to a little-known autoimmune disease called Myasthenia Gravis.

Brown’s mother suffered with “MG” for over 50 years before passing away from another autoimmune disease in June, 1996. Coincidentally, June is “MG Awareness Month,” so Brown is at the wheel again, touring her adopted home state of California and hoping that a third cross-country trip is in the not-too-distant future, perhaps encompassing portions of old Route 66. Brown’s goal is “to put MG on the map.”

“From the time my mum was diagnosed with MG in 1944, hardly any progress has been made, and neurologists still miss this disease (when making a diagnosis),” she said. “Patients should not have to wait years to find out why they can’t swallow, chew food or smile, or why they lose the strength in their arms or legs with no warning.

“So I decided I would tell the public the symptoms to watch for, in the hope that heightened awareness would lead to a quicker diagnosis than the years and years it usually takes.”

Brown, who purchased her “YesWeCan CamperVan” on eBay in 2009, created an organization called Vehicles Working for Causes, and she promotes MG awareness through her website (vw4causes.org), blog (yeswecanjourney.wordpress.com) and Facebook page (The YesWeCan CamperVan) and via Twitter (@YesWeCanJourney). She is looking for sponsors and drivers to help her get the word out.

“I was shocked to discover that the number of people suffering from autoimmune diseases is now more than those with all types of cancer,” she said. “Twenty-four million Americans are afflicted with autoimmune diseases … but they receive only a fraction of the attention and support.”

Brown calls MG a “cruel disease,” and she knows firsthand. In addition to weakening facial muscles needed to chew and smile, MG can cause blurred vision and drooping eyelids. Brown said her mother often slurred her words and struggled to keep her balance, which led others to assume she was drunk.

“The thought of it makes me angry and determined to do something to help,” she said.

And the ’71 Volkswagen camper van has given her a platform. In addition to educating the general public about MG, Brown said she has met a number of MG patients and helped build a support network. Her “VW family” has been particularly supportive, Brown said. She recently participated in the Ranch Run VW Car Show in Sacramento, and the camper van received its usual share of attention.

“If I can educate enough people to spot the symptoms of MG and help their friends or family get a quicker diagnosis, then I’ll be well pleased,” Brown said. “At the very least, I hope the people I’ve met will now treat a person with MG with far more empathy and compassion that they might otherwise have done. At most, I’d like MG to be as well-known as MS (Multiple Sclerosis).”

The drive continues.

1 Reader Comment

  • 1
    Gary Pedersen Fargo ND June 6, 2013 at 19:35
    My mother also suffered from Myasthenia Gravis, being diagnosed in the early 1950's and passing away in 1983 at the age of 68. She lived longer than anyone thought that she would. She had weak muscles that also affected her ability to breathe. In the early years, she spent time in the iron lung as that was the only way that she could breathe. When at home, she slept (and rested during the day) on a rocking bed, which would assist her breathing. Some of the drugs that she took killed her immune system and even a cold would set her back several months. I have Reynaud's disease, also an auto immune disease. Our daughter had issues when she was in vet school, causing her to drop out for a while. She went to several doctors who said that there was nothing wrong with her. We even got her referred to the Mayo Clinic in Rochester. They started by saying that they would find out what was wrong, would not give up. A day later they diagnosed her with depression. Wrong! She went back to vet school, was in the the U of Mn clinic with issues again. The doctor there started asking her about our family history, then said "How could they all miss it?" She was diagnosed with Rheumatoid Arthritis, another auto immune. Keep up the work - even doctors need to be educated.

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