Relationships and living with a Chronic Illness
By Jon Fortenbury (The Atlantic) When should you disclose medical conditions to a date? Friends? When is illness too much for a relationship or friendship to survive? Read this article
Sleeping and Chronic Illness
By MedcineNet.com The pain and fatigue that people with chronic illness experience have a large impact on their daily lives, including sleep. Because of their illness, these patients often have trouble sleeping at night and are sleepy during the day. This is especially the case for people who have neurological (nervous system) diseases such as Parkinson's and [...]
Chronic Illness & Mental Illness
By Canadian Mental Health Association Mental health and physical health are fundamentally linked. People living with a serious mental illness are at higher risk of experiencing a wide range of chronic physical conditions. Conversely, people living with chronic physical health conditions experience depression and anxiety at twice the rate of the general population. Co-existing mental [...]
Most Expensive Medical Procedures of 2016
Article Taken from Healthcare Global Healthcare in the United States is expensive, but which medical procedures carry the costliest price tags? In a recent issue of Healthcare Global magazine, they profiled the top 10 most expensive medical procedures, below are the top six. Liver transplant USD $577,100 Bone marrow transplant USD $676,800 Lung transplant USD $797,200 [...]
Naia Rare Diseases Forms Scientific Advisory Board Comprised of Internationally Renowned Experts and Scientists
Naia Rare Diseases Inc, a subsidiary of Naia Limited, Forms Scientific Advisory Board Comprised of Internationally Renowned Experts and Scientists — Company Appoints Advisor of Patient and Physician Relations — RICHMOND, Calif., January 7, 2016 – Naia Limited, an international drug development company today announced that its subsidiary, Naia Rare Diseases, has formed a Scientific [...]
Cupcake Dream Motivates Doctor
Butler County boy's cupcake dream motivates doctor By Luis Fábregas | Monday, May 21, 2012, 11:47 p.m. Austin Rath is almost 6 years old and never has had a drink of water. He hasn't eaten a cupcake, either. The kindergartner from Renfrew in Butler County lost about 90 percent of his intestines shortly after birth because [...]
CenterWatch Weekly Article: SBSF and NPS Pharma Partner on New Project
SBS Foundation & NPS Pharmaceuticals partner to connect, and eventually recruit, patients CenterWatch Weekly, December 9, 2013 The Short Bowel Syndrome Foundation (SBSF), a nonprofit group that worked with industry leaders to support NPS Pharmaceuticals in gaining FDA approval for its drug Gattex last year, now is undertaking a new project that will be a [...]
Making Every Patient Count a Business Imperative
BEDMINSTER, N.J.— Drug companies are fond of saying that every patient counts, but in the world of orphan diseases, entire business plans are built around the idea. That is why Andrew E. Jablonski, a 26-year-old from Lincoln, Nebraska, was a guest of honor this month at NPS Pharmaceuticals, a small New Jersey company that is about [...]
Lincoln Journal Star article
Recently I was featured in my local newspaper: The Lincoln Journal Star. Every year they have a sub-section of the newspaper called "Heartland Hero's". People who have or are making a difference in the Nebraska community. This year I was chosen as one of eight for this honor. The paper came out and did a [...]
Both Patients and Physicians Need To Communicate In The Exam Room
Today’s healthcare consumers are increasingly asked to take a more participatory role in their care. For many this is a daunting task, even if the patient relishes the role. There are a myriad of issues undermining patient-physician communication – such as time constraints, lack of comfort with the subject matter, lack of shared language, or even fear [...]
Becomming an Active Self Manager of your SBS
How can one have an illness and live a healthy life at the same time? We “positively manage”, that sounds like a double standard, but in all reality, even when you are sick, life continues on. We still have everyday activities to complete, such as household chores, errands, sporting events, family events, socialization, the list [...]
Communication
How often do we hear the term “You just don’t get it” or “You just don’t understand”? A statement expressed or unexpressed sums up a frustrating verbal communication. The goal in communication between yourself and others is that you want the other person to understand what you are trying to explain. Feeling that you are [...]
Experts by Experience
I am 26 years old and have lived with short bowel syndrome, a rare intestinal disorder, and my entire life. When it comes to this disease, I’m’ an expert by experience. Short Bowel Syndrome is a rare disorder that affects about 15,000 to 30,000 people in the US. SBS is the result of a congenital defect [...]
Telethon helps miracle baby
This was an article written by Mizzou Weekly in 1987. At the time my family still lived in Columbia, Missouri due to my short bowel syndrome care. I was chosen as the promotional child of the year for the telethon. Telethon helps miracle baby May 15, 1986: Columbia, Missouri-Mizzou Weekly Mizzou staff member Leo Jablonski [...]