For most of us, a diagnosis of ALS, also known as Lou Gehrig’s disease, would mean toning down on work. After all, ALS is rather grim: the disease causes the breakdown of nerves controlling certain voluntary muscles, confining many of those afflicted by the disease to a wheelchair for life. Medication and therapy can slow ALS down, but there is currently no cure available. However, for Titusville resident Sara Cooper, living with ALS is more of an opportunity than an impediment. As ALS awareness month (May) has come to a close, Cooper’s story is a reminder of the work that still needs to be done in spreading awareness and helping the ALS cause.
Cooper first began noticing that certain muscles were failing her around two to three years ago. Her feet and hands began to fail her, making everyday tasks like cutting vegetables extremely challenging. After realizing something was wrong, Cooper went to the doctor and was officially diagnosed with ALS in November 2018. She mentions being “very fortunate in getting an early diagnosis” to prevent surgeries that would not treat the root cause. Since the diagnosis, Cooper has been confined to a wheelchair. However, that has not stopped her from spreading awareness about ALS, a cause she sees as being vital in the movement to treat and ultimately cure the disease.
“Awareness is a power not acknowledged enough. Many people don’t know what ALS is,” said Cooper. She explained that raising awareness about ALS would help more people get diagnosed early on so that treatment is more effective.
Not surprisingly, when asked what she has been doing since quarantine, Cooper, without hesitating, said, “I’ve been spending most of my quarantine spreading awareness about ALS.”
When asked how widespread ALS is in Mercer County, Cooper talks about the disease “being more prevalent than many of us know.” As many people take more than a year to get diagnosed, the actual numbers of ALS patients is likely much higher than reported, explained Cooper. That is why Cooper has made it her mission to spread awareness about ALS — so that people with ALS symptoms will get diagnosed and existing ALS patients will open up about the disease. She mentions working on “multiple articles related to her fight with ALS and going completely public with her condition.” By doing so, she was overwhelmed by community support and learned about all the help centers available in Mercer County. Sadly, ALS is a battle many patients try to win on their own.
Cooper wants everyone afflicted with ALS to have a support network. She shares her personal experience by mentioning, “what has come from opening up is so much support from the community.”
ALS awareness month, each May, is also about putting more promising drugs on the market, explained Cooper, “I can’t wrap my head around why the FDA has taken so long to approve promising ALS drugs dating back decades ago that are still going through clinical trials.” To her, these drugs have the potential of extending lives and should not be unfairly hindered because ALS is a relatively new disease that is still to be researched. Spreading awareness will help promote ALS research and lessen the stigmatization around the disease, says Cooper.
Even though May has come to a close, Cooper’s message of spreading ALS awareness does not end there. Having ALS conversations and encouraging people to open up are the building blocks to an eventual cure for the disease. Cooper mentions that “every 90 minutes someone dies from ALS.” Let’s let that be the start to our conversations.
Submitted by Brian Chin. Chin is a rising junior at Hopewell Valley Central High School. His favorite classes are math, computer science, and history. He’s involved in Model U.N., Future Business Leaders of America, and robotics. Brian enjoys reading, hanging out with friends, and playing tennis in his free time.