Familial Dysautonomia

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    Lynsie Buteyn

    Dysautonomia Makes Me Even More Thankful for Water

    Today I’m feeling gratitude for water, the source of life that composes 60 percent of my body. Life can only survive in a very narrow range of temperature. Water is essential to sustaining that temperature range inside each one of us and within the world around us. In fact, every biochemical reaction that occurs within us is dependent upon water. Because of my disease, dysautonomia, I need intravenous fluid to maintain my hydration. One day a week the needle I get this water through is taken out and changed, and I can quickly feel how my body loses its blood supply to all my organs, as I grow dizzy and my heart works harder. After I get a new needle put into my body so that water can once again flow through me, I feel life…or hope rushing back to each cell within. Hope because standing seemed like an insurmountable challenge in my weakened state, but given water it becomes an obtainable feat. I may get my water in a different way than others, but being forced to become nourished through IV fluids only emphasizes a truth of life a bit more for me: we are all dependent upon water. A normal person can go three days without water before dehydration becomes an emergency, but for me it is mere hours before my body’s organs are no longer functioning properly. This different existence from so many others makes me look at people playing sports, or even simply walking on a hot day, with a sort of awe someone does when they witness the miracle of birth for the first time. Rationally, you know people have babies, but actually seeing it gives you a sense of awe in how life begets new life. There is something undoubtably miraculous about the whole process. This is the same feeling I get when seeing a body utilize its water to perform a sport under the duress of hot weather. To witness the small miracles that the body performs to play a sport under the hot sun will often brings tears to my eyes. Today, I am especially grateful for the water I receive through intravenous hydration now that there is a shortage of IV bags in the USA. This shortage is due to disruption of production that occurred due to Puerto Rico’s hurricane aftermath. Having too much or too little water in a place or a body can cause massive imbalances that impact life in direct and indirect ways. When climate change causes our earth to have more severe weather events, the imbalances in water causes changes to some lives immediately – changes like the ones I see when I don’t get my IV fluid and life, suddenly, becomes very fragile as each heart beat becomes a massive feat to manage. Other changes due to water imbalance will be less pronounced and remain mostly invisible until the crisis is at one’s front door. This is how a normal person dehydrates. Their body can compensate much longer with less fluid – to the point people don’t realize they are becoming dehydrated – that is, until it’s an emergency. This is the type of emergency the disruption to the production of IV fluid is creating. I am still getting my fluid. There is no real emergency at this point, but if Puerto Rico does not stabilize soon, it will be an emergency that eventually reaches me and many others. It shows me how interconnected all of life is. Once again, my eyes start to water a little at how each life or life function affects other lives in ways we don’t fully realize until that life or byproduct of one’s life is put into jeopardy. It reminds me that I am grateful that I have the fluid in my body right now to cry tears of awe at life and the miracles that each life performs just by being here. We want to hear your story. Become a Mighty contributor here . Gettyimage by: thekopmylife

    Phone Call From Pediatrician Changes Family's Lives Forever

    “I should come over and talk about the test results in person,” our son’s pediatrician said over the phone that Sunday night in January, almost exactly six years ago. I knew what his words meant, and I collapsed on the stairs in my parents’ house, where my son and I were staying for the weekend while my husband was away. The rest of the evening is a blur with pockets of clear memories that stand out. I called my husband to tell him the news — that our son had familial dysautonomia (FD), a genetic disorder which has affected less than 700 people worldwide. My father drove my son and me back to our apartment, and my sister called to let us know they were there for us for whatever we needed. We were entering unknown territory and only knew that it wasn’t someplace we wanted to be. During the next few days we began to gain more knowledge about his disease — some things positive, some things heartbreaking. He would be delayed, his lifespan would most likely be shortened, he would have constant medical concerns. But we were told that he is made up of more than his FD genes – he has our good genes too. I don’t know if we would have been able to hear this advice six years ago, but I wish we would have somehow understood that we had to both trust others and truly trust ourselves. We’ve grown to trust other FD families, who are the only ones who go through what we go through, even though each child is different. We’ve learned to trust therapists and doctors and those with opinions who think outside the box. We’ve learned that we would be our son’s best and sometimes only advocate. We learned the hard way, time and again, that we shouldn’t always follow what experts recommend or insist upon. We were comforted and reassured and guided, sometimes down paths we didn’t want to take. Time and again we had to regroup, reach out for help, listen to our instincts and forge our own way. It’s possible that no matter how we heard this lesson, we wouldn’t have learned it until we lived it. Our son has grown into a smart, loving, funny and sociable kindergartener. He has more than his share of bad days but is learning to trust himself in understanding how he feels. We know that with the level of love, support and knowledge we have now, his future will remain optimistic, and anything will be possible if we trust in him and in ourselves. For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .