A mom, up most of the night with her inconsolable infant son, suddenly finds herself in the intensive care unit, now counting the breaths he takes over the ventilator. They are few and far between. The different physicians, questions, and testing in the last 48 hours are leaving her exhausted and empty. She wants to hold her baby, but she’s not able to yet. The diagnosis they’ve been given leaves very little room for hope and far more questions. What does this all mean? She’s never heard of such a thing as a rare neuroimmune disorder. The doctor has only seen this once before in his 20+ year career. Should he even be treating her son? What does her child’s, her family’s future hold?
Many families experiencing the shock and overwhelming emotions of a rare neuroimmune disorder take to the internet for answers. Many find us online and connect with us via our Myelitis Helpline or email. A personal phone call provides a caring voice to answer questions, direction to available resources and information about research being done on rare neuroimmune disorders. We also offer direction through our Medical Professional Network of 175 experts to connect families and individuals to not only show where the most experienced physicians are, but also provide connections between the experts in these disorders and clinicians around the world. A peer-to-peer connection to an expert can be invaluable for a family not able to travel and may help ensure a proper diagnosis, treatment options, and rehabilitation recommendations.
A husband watches as his wife works with a therapist. It has become a daily routine, hours of daily therapy, making certain she can adapt and get back to their home. They’re manipulating her wheelchair and placing her body just so, to best transfer her into a vehicle. He’s called in to slide her over and position her safely. She seems complacent, just going through the motions with minimal verbal communication. He knows she hates being so dependent upon him for such basic skills. Six months ago, she was running, hiking, biking – athletic and always on the go. His heart wrenches as he sees the despair in her eyes but doesn’t know what to say or do. They’re so close in proximity, yet the distance between them is gaping. Their community, family and friends were so helpful when they first learned of her diagnosis and they know they still care but it seems everyone has gone back to their “normal” except them. They both experience such a sense of loneliness. Is this their life from here on out?
Recovery from a rare neuroimmune disorder is often a long and difficult process. From the individual experiencing the changes and frustration with their body, a sense of grief over what they can no longer do, to the family and loved ones feeling helpless and uncertain on how to connect with someone they love so much. It can be so isolating. And that’s where we step in: by providing meaningful connections between individuals diagnosed with the disorder, or caregivers and loved ones who understand the shock and overwhelming sense of loss. And connections in 2018 didn’t fall short. Through Smart Patients, our Online Community Platform, we welcomed 301 new members to the community for a total 1,427 members. Our Support Group Network has grown to 28 national and international support group leaders. Being able to speak or correspond with someone who truly empathizes with all the nuances these disorders can bring to a person or family can mean a day, a moment, is easier to see through – even the celebratory ones. A new friendship or learning of a new resource from a personal connection or support group meeting can offer a shining light of hope to someone, reassuring them that they’re not alone. We’re in this together.
An HR rep from the largest employer in a small town is stumped. A long-time employee, retiring next year and anxious and excited to pursue his dreams of traveling, was hospitalized after collapsing with excruciating pain. He was diagnosed years ago with a rare neuroimmune disorder and the years of pushing his body to its max and the overwhelming fatigue, has caught up with him. His family tells her he can no longer perform the job the same way he has for over 30 years, but they’re not ready to be without his income. This flare in his otherwise manageable symptoms wasn’t a part of the plan. She hears their fear and doesn’t know where to turn to begin to understand what this hardworking, dedicated man may be going through. Maybe they can make accommodations, but she needs a better understanding of his diagnosis and why this is impacting him again now, so many years later, so she knows where to begin and how she may be able to help.
A call to our toll-free number or an email to [email protected] connects every person or organization who reaches out to us with a staff member. Every call and email are answered personally and offer support and direction via our individual experiences and the resources available on our website and Resource Library. We have provided support to over 2,132 individuals, parents, spouses, friends, co-workers, employers, and treating physicians and clinicians in 2018, as they seek information about treatments, outcomes, research, support and connections with others about the rare neuroimmune disorders.
A rare neuroimmune disorder can happen to anyone of any age, race, gender, or lifestyle. It usually comes out of nowhere, sending an individual and their loved ones into a tailspin. So many have never heard of these disorders, let alone know what they mean. An overwhelming sense of anxiety can often accompany these diagnoses, barraging an individual, a parent, a spouse, friend, or co-worker with so many questions. If not immediate, as time moves on and the realization of the disorder and it’s possible or continued impacts, a sense of loneliness and isolation may set in. These disorders are so rare, almost unheard of, where can one turn to find answers, to ask questions they may not have even formulated yet, haven’t dared to ask over the years, or find someone else who truly knows the indescribable pain one may be in – physically or emotionally?
SRNA is where they turn. Whether they find us via a sleepless night’s Google search, as a referral from a clinic or physician, a local support group, or a friend of a friend who has heard of SRNA, we receive the inquiries, and we are here, ready to support this community. Our community.