LITERATURE REVIEW Finding Each Other The Evolution, Clinical Impact, and Future Horizons of Patient Advocacy in the Intestinal Failure Community Andrew E. Jablonski, BA · Short Bowel Syndrome Foundation Download the full literature review SBSF-branded PDF · complete text, abstract, sections, and references Download PDF → ABSTRACT Background: Intestinal failure (IF) is a rare, life-threatening [...]
History of Parenteral Nutrition Total Parenteral Nutrition (TPN) boasts a rich history dating back to the mid-20th century, with Dr. Stanley Dudrick leading its pivotal development in the 1960s. Dr. Dudrick's groundbreaking efforts focused on administering a specialized mixture of amino acids, glucose, electrolytes, and essential nutrients directly into a patient's bloodstream. This innovative approach [...]
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 [...]
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 [...]
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 [...]
By Cathy Pederson General Tips: Pack your regular medication in their original bottles (if flying) or your pillbox. Take a few extra pills for each medication, just in case. Be sure to fill prescriptions before you leave – don’t count on being able to get the medication when you arrive at your destination. Pack salty [...]
By Michelle Haxby Rare is what comes between my daughter and the world, it limits her. Rare has flipped my world upside down and forever changed me. It keeps me on my toes, it keeps me searching for answers. Read More
