One inspiring patient shares an important message: YOU are your own best advocate
Every once in a while, we hear a patient story that gets to the heart of why we do what we do, that reminds us why we are working every day to help patients find and take part in clinical trials. Linda VandeVrede has one of those stories.
She’s a former high-tech PR executive who is anxiously awaiting medical advances that may offer some relief from her chronic pain. Linda’s been a supporter of TrialReach since she found us through social media – she believes that in the medical community, self-advocacy is key. So how did a thriving career woman become a patient advocate and one of the loudest voices for chronic pain research?
Linda’s pain started during flights to and from Europe. The pain would kick in, but it would subside when she landed and she’d forget about until the next flight. The tech world was booming, and Linda didn’t have time to dwell on the pain. She didn’t have time, that is, until 2007, when she felt an incredible jolt of pain in her right leg, unlike anything she’d felt before. She left work and went to her doctor’s office immediately. X-rays revealed no issues, and Linda’s quest to figure out her medical condition began.
The next five years were devoted to finding an answer. Linda was forced to give up the career she loved because she could not tolerate sitting or standing in front of a computer for any real length of time. She tried everything, from neurologists to acupuncturists, from cranial sacral therapy to physiatrists. No one could provide any answers, or even any relief. She began to think that doctors didn’t want to see her: “after awhile, you get the sense that because doctors can’t find anything, either they don’t believe you’re really in pain or they just want to move on to someone they can help.” To add insult to injury, Linda is someone whose body cannot tolerate opiates – they either have no effect or she winds up in the emergency room.
Desperately searching online for answers, Linda came across an online forum of people with the same symptoms she had. In talking to members of this forum, she found her answer: Piriformis Syndrome, a condition in which the piriformis muscle constantly suppresses the sciatic nerve. It’s very uncommon, and is typically caused by either repetitive or sudden trauma. Online research uncovered a paper on the condition that sounded like it could have been written about Linda. She reached out to the surgeon who had written the paper, and when she went to see him, he instantly knew how to trigger her pain. Thrilled that she had found someone who finally “got it,” Linda agreed to an invasive surgery, where the doctor released tension from her nerve but found irreparable damage to her sciatic nerve. While she found some relief from the surgery, if she had had this procedure ten years earlier, the results would have been different.
Unable to find relief surgically or medically, Linda lives in a constant state of pain. She speaks out against sensationalist media stories about drug-addicted pain patients, and is anxiously awaiting trials for a new class of medication called a sodium channel modulators. While she considers herself well-educated on chronic pain and her treatment options, she continues to find “ClinicalTrials.gov so incredibly frustrating.” She says the multitude of names for chronic pain makes her condition terribly difficult to research, and can’t wait for TrialReach to take on chronic pain to structure eligibility and remove the guesswork from trial searching. We assured her it’s on our list! While she waits, Linda is shouting from the rooftops about the importance of research in this field, and building a large network through social media that allows her to connect with some of the 100 million other people who experience chronic pain. She says, “when you have pain, you’re not likely to get out there and advocate for yourself. It’s disabling, but people can’t tell you have a disability. You can spiral. I try to stay positive for me, and for everyone else.”
Linda’s message to other patients is to realize early on that you are your own best advocate – educate yourself, and don’t be afraid to take the lead in doctor’s appointments. While the doctor is an expert in medicine, you are the expert on you and how you are feeling. We couldn’t have said it better ourselves. Linda, you’re an inspiration to all patients – especially those unsatisfied with current treatment options. Thank you for taking the time to share your story with us!