Andrew Jablonski: The Mighty Contributing Partner June 2nd, 2017 "I never imagined I might die from my own illness and its deadly side effect. I came close to that happening." https://themighty.com/2017/06/short-bowel-syndrome-surviving-septic-shock/
Dear SBSF Member, Are you a parent, child, or teen? We would like to invite you to help us support the development of a new SBS patient-reported conclusion survey for patients diagnosed with short bowel syndrome (SBS) in the pediatric ages. We encourage the parents to fill out the survey as a proxy to [...]
By: Gina Szajnuk I truly believe your note says more about you as a person. This is why I continue to advocate for my children and for all rare and undiagnosed children. We live in a world where people judge you by the way you look. We live in a world where doctors don’t always believe [...]
By: Rachel Allison Why? Because this illness likely affects the way you live your life and downplaying its validity belittles the full reality of what you awake each morning to face. It may leave you feeling worthless for being so exhausted from fighting – because why would you be exhausted from fighting a battle that isn’t [...]
By: Anna Lente I find myself curled up under a blanket in the recliner, watching reruns of sitcoms and scanning Facebook while stress eating. I feel so lazy. I feel like I’m not good enough. But then I remind myself, this isn’t laziness. I remind myself I work very hard each day to deal with my [...]
By: Caitlin Wren Yes. Sometimes I can walk just fine without any aid. I might not even limp. Other times I need a cane or crutches. It’s just the fact of my life. I have an illness that causes pain in a variety of areas in my body, especially my hips which are rather important in [...]
By: Lizzie Davidson Because conventional thinking and diagnosis still seem to lean towards boys who are more often identified autistic as young children, there are still vast amounts of girls and women out there who remain undiagnosed. Finding out information about the diagnostic process is not easy. There are things I wish I had been told. And I believe that [...]
EVMS Magazine 2016-2017 Issue 9.4 Doug Gardener Dramatic improvement seen in patient survival in ICU; Chance discovery could transform care of sepsis and save millions of lives worldwide NORFOLK, VA (March 23, 2017) – A critical-care physician at Eastern Virginia Medical School (EVMS) believes he has found something that has eluded medicine for centuries: a [...]
By: Laura Russin I’ve read many articles and blog posts about picky eaters. They put forth an expanse of knowledge and make loads of professional suggestions. They also all miss one incredibly important thing: there is an enormous difference between a “picky eater” and a “sensory eater.” The valid suggestions provided are geared for picky eaters [...]
61% of Americans turn to the internet for medical advice. while there is an abundance of healthcare information on the internet, many patients look for something more, such as an emotional connection. These connections are found through online support groups. In fact 1 in 5 online users have gone to the internet for support for [...]
By Jacob Durn Throughout life’s miseries, accidents, awkward moments, mistakes and nearly all social situations, I have the burning desire to scream this into the faces of all those around me: Why do I have to live like this? Read More
By Kalie Menge Almost every day now, I convince myself recovery is a pipe dream. I see where I’ve been, I see where I am and I see how many millions of miles away recovery is. I know it’s not getting any closer. I’m not getting any better. I’m getting worse, and I’ve been getting [...]
By Kate Rusmiselle I’m doing more than OK, because I have friends who accept me as who I am and I continue to meet people who will. A lot of people have done so with no questions asked. When friends do ask why I am the way I am, it is out of genuine curiosity [...]
By Liz I. I try to look at it through a logical lens. What is the science behind it? From that perspective, I would have to say it is an illness. Its cause is likely multifaceted. So my depression boils down to a list of symptoms. But does it make a difference when some of [...]
By Kayla Shuch A woman who noticed I was in a wheelchair looked at my cast and asked, “What did you do to yourself?”I wanted to slap her in the face and gave a glare as to say WTF? I didn’t do anything to myself. My parents understood my reaction and explained my situation. This experience has become one of the [...]
Authored by: Samantha Craft In my day-to-day living, I seek out the familiar. Because the familiar doesn’t need to be analyzed. And in that there is ultimate refuge for me. Familiarity can come in multiple shapes and sizes — in a predictable routine, a familiar voice or face, a soothing melody, a favorite movie or [...]
The whole “put your oxygen mask on before you help someone else with theirs” thing… I’ve had to embrace it as my health has worsened over the last few years. That concept is hard for most moms because we tend to put our kids’ needs above our own, but if I don’t take care [...]
I was so overwhelmed by emotions of rage, frustration and, worst of all, helplessness. I was lying in a hospital bed surrounded by doctors who didn’t understand my body and didn’t appear to want to listen to me. But I was lying in a hospital bed, which meant I was depending on them to [...]
I have a wonderful group I can turn to for help, and I have a couple members I can talk to about what our lives are like. Other than this group, I hide. And here’s why. I live in a small town, and when Brady first came home from the hospital I actually got [...]
I can be dying inside while going through the motions of the day. It’s not difficult for me to know how others expect me to act. Acting fine is a cognitive process. You can probably mention right now how an emotionally stable or “mentally sane” person is supposed to act. It really is simple. A generally [...]
