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Teaching Others About Your Child’s SBS Diagnosis: A Mothers Perspective

This was an article written by one of our own SBS community members and published on The Mighty Newsletter (www.themighty.com). A great perspective to learn from. I want to start sharing my miracle, because it’s time people know what families with short bowel syndrome are really going through. I just want to explain to everybody that I didn’t “cause” this, and this is what is really happening when you see my son. I’ll admit, I have been in hiding. I hide our whole life. Not because of shame, but because of fear. The day my son Brady was born with gastroschisis and a mid-intestinal atresia, which means his intestines were outside of his body. He lost 70 percent of his bowel and his ileocecal valve (which is a flap that keeps bacteria from coming back up into the body). He was on TPN for the first six months of his life and didn’t come home until he was 7 months old. Then, he was given a G-tube so he could get nutrients. He had a severe oral aversion; he’s never been bottle-fed. Others in our small town, who see us in public are quick to judge my child. There were people telling me I must have done something wrong while I was pregnant. This is further from the case. Read more below to get the full story! […]

A Letter to Parents of Children With Special Needs, From a Pediatric Nurse

This is a great article published by a contributor on The Mighty Newsletter (www.themighty.com) The parents I have worked with have often shrugged away my compliments at their strength and tireless work to benefit their children. They have reminded me that they did not ask for this life, but that they love their children enough to keep fighting. You may not have asked for this life, but you have taken it on with such grace and persistence, even in the face of steep odds. Your incredible strength inspires me in every area of my life.  […]

SBSF Fall Jackets for Sale (Donation to SBSF)

Once you submit this form. SBSF will get an email with the info. Wait for us to email you! You will not be required to pay at the end of this form but the total amount, quantity, and sizes, help us complete your order so we can invoice you correctly. The Short Bowel Syndrome Foundation [...]

100 Envelopes Contributors

        The Short Bowel Syndrome Foundation, Inc and its newly formed divisions, would like to thank the following people who have contributed to our online Envelope Fundraiser. We thank you for your patronage. Pam Aguiar Andy Jablonski John Jablonski Larry Jablonski Leo Jablonski Paul Jablonski Florence Jablonski Mary Ellen

100 Envelopes Fundraiser Challenge 2016

        Thank you for participating in the 100 envelope fundraising challenge online (we also have envelopes we can mail out in the same amounts). Here are the guidelines for the fundraiser. They are pretty simple and not much is involved in this virtual fundraiser, which we will also replicate in other areas, [...]

Why I Decided to Start a Foundation for My Rare Disease

Living with my condition short bowel syndrome (SBS) has affected my life in many different ways over the years — physically, emotionally and socially. They all have their positives and their negatives. These experiences – both positive and negative – were the driving force in establishing the Short Bowel Syndrome Foundation. Primarily, because I have an [...]

When a Doctor Told Me ‘Helping Others With My Condition Should Be Left to Trained Medical Professionals’

At 30 years old, I’ve lived with short bowel syndrome (SBS), a rare intestinal disorder, for my entire life. When it comes to this disease, I’m an expert by experience. SBS is the result of a congenital defect or trauma and affects about 15,000 to 30,000 people in the US. It is a condition that reshapes the way you [...]

The tangible effects of invisible illness

http://ct.counseling.org/2016/04/the-tangible-effects-of-invisible-illness/ A variety of invisible illnesses can greatly impact both the physical and mental health of individuals. Some of these illnesses are debilitating, preventing participation in the normal activities of daily living. Examples include chronic fatigue syndrome/myalgic encephalomyelitis, Ehlers–Danlos syndrome, fibromyalgia, lupus, Lyme disease, multiple sclerosis, myasthenia gravis, postural orthostatic tachycardia syndrome (POTS), regional complex pain syndrome [...]

Finding Support in Online Communities

Finding Support in Online Communities By NPS Pharma, SBSF, Oley Foundation, & NORD Less than 1% of the population lives with a rare disorder. Finding support can be scarce and difficult. Though with social media, online communities have formed of patients, all supporting each other. The Short Bowel Syndrome Foundation, Oley Foundation, and National Organization [...]

Time to Register for Oley 2016: Newport Beach, CA

By The Oley Foundation Newport Beach Marriott Hotel & Spa Newport Beach, California July 5-July 9, 2016 Rooms at the Newport Beach Marriott are available at $169/night for single/double, $209 for a triple, or $229 for a quad, through June 17, and will be honored three days pre and post conference, based on availability. The [...]

To Much Social Media Can Lead to Depression

By: Kayleigh Lewis The more time young adults spend on social media, the more likely they are to become depressed, a study has found. The 1,787 US participants used social media for an average 61 minutes every day, visiting accounts 30 times per week. Of them a quarter were found to have high indicators of [...]

Foundation to soon go live with new website

LINCOLN, NE., April 7, 2016 – The Short Bowel Syndrome Foundation, Inc. is proud to announce that later this month, the foundation will be coming out with a brand new website. The website was created by FireSpring, Inc. A Non-Profit Business that supports other non-profits. The Foundation has made some major changes in design, content, [...]

High-sugar diet is as ‘damaging to your brain as extreme stress or ABUSE

By DailyMail Sugar found to be as damaging as early life stress, scientists discover. Chronic sugar intake triggers changes to hippo-campus the area of the brain, which is important for both memory and stress.Experts say changes noted in the brain are of 'great concern' given the high consumption of sugary drinks, particularly among young people. Read this [...]

Why is Depression common in people with Chronic Illness?

By MedicineNet Depression is one of the most common complications of chronic illness. It is estimated that up to one-third of individuals with a serious medical condition experience symptoms of depression. Read this article

Dutch open their first ‘poop bank’ to treat gut diseases

By Yahoo Health News After blood and sperm banks, Dutch researchers have now opened the country's first "poop bank" in a rare and cutting-edge branch of medicine to treat people with chronic gut infections. Read This Article

Boston Children’s Hospital Short Bowel Syndrome Overview

Boston Children's Hospital is known for its innovation in Short Bowel Syndrome. It was where the STEP procedure was created by a team of surgeons to lengthen the small intestine. They give a solid overview of the condition. Visit their site for SBS when clicking on Read More. Read More

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 [...]