The 5 Steps I Took on My Journey After a Trauma
Authored by: Quenby Schuyler Contributor on PTSD Trauma dragged me to the depths. A friend once said, “The scariest place I’ve ever gone is deep inside myself.” But it’s in the surfacing, the slow swim upward, that can be transformative. With each slow slog from the depths of despair to the warm shallow waters of acceptance, I found joy that propelled me up from the deep to the surface. I began to breathe [...]
Being sick is not a competition
Authored by: Alexandra Kaye Contributor on ehlers-danlos-syndrome We need to recognize the reality that people are in pain despite the fact that it seems like it could be worse. By downplaying somebody’s illness (“it could be worse!”) the person becomes incredibly invalidated. Even though it’s your effort to try to make them feel better about their situation, it often makes them feel worse. It makes them feel guilty that they are [...]
22 Things People With Invisible Illness Wish ER Staff Knew
Authored by: Erin Migdol : Editor of General Chronic Illness for The Mighty. To help ER staff better understand how to treat patients, we asked our Facebook community with invisible illness to share what they wish ER employees knew about them. Just because the cause of your symptoms may not be visible doesn’t mean you should be doubted or treated with less respect, and we hope this helps ER staff rethink how [...]
Meet Aria and her mom Rachel!
This is a story about one of our short gut families and their journey. This is Rachel and Aria's story! Hello my name is Rachel my daughters name is Aria she is about to be 8 months! I had a pretty normal pregnancy until my 22 week appointment. They did a full anatomy scan on her and seen what they thought was a ovarian cysts. So I started to see [...]
Sales of Parenteral Nutrition Market will be worth US$6.9 with a CAGR of 5.7%
Click here for original published article The progress of the global parenteral nutrition market is based on the high prevalence of chronic conditions across the globe. The rise in cancer, AIDS, diabetes, Crohn’s disease, gastro-intestinal disorders, and short bowel syndrome cases has also led a growth in the consumption of parenteral nutrition in the recent years. The World Health Organization (WHO) affirmed this fact with statistics indicating that there will [...]
Short Bowel Foundation Membership
In 2017, the Short Bowel Syndrome Foundation, Inc. is introducing a new membership program. In the past we have kept in touch with most of our following, and giving out our news updates through social media, often through links on our website to redirect the person to the foundation homepage. Though! What if Facebook crashed overnight, and could not be fixed? Support would become hard to come by again, and [...]
Being Sick Is Not A Competition
Authored by: Alexandra Kaye: Contributor for The Mighty Everything in life is a competition now it seems. In the world of people living with illnesses (acute or chronic), well-meaning people make being sick into a competition too. Most of the time, it’s an attempt to make somebody feel better by saying, “at least it’s not X” or “it could be worse.” And they’re right, I guess. At least I have [...]
7 Life Lessons I Learned From Parenting My Toddler With Special Needs
Authored by: Brianne Coffey Contributor for The Mighty I found the light when I recognized the important life lessons my 2-year-old with short gut syndrome (also called short bowel syndrome) was trying to teach me. There are seven lessons I carry with me that I’d like to share with you: Read more on Brianne's Journey on The Mighty! Brianne Coffey is a stay-at-home mom of a very energetic and charming [...]
What I Post on Facebook Versus My Reality With Chronic Illness
Authored by: Carmen Hartgerink: Contributor for The Mighty We all know that what we see on Facebook isn’t always what exactly happens in real life. Everybody posts the good stuff. They want to show off, show the progress that’s happening in their lives, and boast about the highlights of what’s happening in their life. Well, here’s the inside scoop of what my reality actually looks like vs. what I like to show on Facebook. [...]
Why I’m No Longer Hiding How Short Bowel Syndrome Affects My Child
Authored by: Crystal Noe: Contributor to The Mighty on Short Bowel Syndrome. Brady, was born with gastroschisis and a mid-intestinal atresia, which means his intestines were outside of his body. Different parts can be out, but he had all of his bowel out, as well as his stomach. Because of this, he lost 70 percent of his bowel and his ileocecal valve (which is a flap that keeps bacteria from coming back up [...]
When Another Person With Chronic Illness Judged My Invisible Illness
By Jenny Jones: Contributor: The Mighty Jenny was diagnosed with familial adenomatous polyposis at age 8, and after six years with an ileostomy now has a straight pull-through. She has a master’s degree in social work and shares on her personal blog Life’s a Polyp. “You don’t have anything wrong with you. You have no issue walking,” he said with disdain for what I shared with him as I tried to [...]
Sit Down with Dr. Donald Kirby: Improving Outcomes with Parenteral Nutrition
Dr. Donald Kirby, one of the foundation's Board of Directors and the Director of Human Nutrition at the Cleveland Clinic in Ohio, is one of the most respected physicians in the short bowel industry. The Journal of Gastroenterology and Hepatology sat down with Dr. Kirby to discuss improving the outcomes in patients with Parenteral Nutrition. Gastroenterol Hepatol (N Y). 2012 Jan; 8(1): 39–41. PMCID: PMC3277197 G&H What are the most [...]
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. […]
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, besides online only! Fundraiser Guidelines: Individuals to choose a number and donate the amount on [...]
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 understanding of the core issues related to SBS – the need for education, support and [...]
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 live. There are multiple things you become accountable for, including self-managing your condition, keeping on [...]
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 and Sjogren’s syndrome. Many chronic illnesses are not terminal conditions, but they can severely impact [...]