“It's in My Blood”: Roy George — A Dramatic Life with a Short Bowel In the “It's in My Blood” series, Roy George shares his love for music, theatre, basketball, and advocating for short bowel syndrome.

" #Music is the universal language. Everyone can speak it. Even if you don’t like their specific type of music there IS common ground. There ARE ways of relating & achieving the goal.": buff.ly/vMOGbvK

#musician #ShortBowelSyndrome #ChronicIllness #spoonie

An infant with residual small bowel length of 9 cm and #shortbowelsyndrome received teduglutide for 6 years, resulting in complete discontinuation of parenteral nutrition. Regenerative medicine via GLP-2 therapy aspenjournals.onlinelibrary.wiley.com/doi/10.1002/...

Join our open access course “Short Bowel Syndrome: Managing Nutrition and Care in Paediatric Patients”.

See what our learners had to say 📊 The feedback says it all! Register now: ow.ly/sAvY50WF6z1

#Paediatric #ESPGHAN #Nutrition #GI #Learning #ChildHealthcare #ShortBowelSyndrome

A new comprehensive review of the proglucagon-derived peptides #disbetes #obesity #shortbowelsyndrome journals.physiology.org/doi/abs/10.1...

Predictors of response and enteral autonomy in children with short bowel syndrome treated with teduglutide: a real-life multicentre cohort study In children with SBS, longer residual small bowel, better nutritional status and absence of liver disease were associated with response to teduglutide. Complete PN weaning was predicted by lower calor...

In 104 teduglutide-treated children with #shortbowelsyndrome a clinical response was detected in 70% and.complete weaning from parenteral nutrition was achieved in 22% www.thelancet.com/journals/ecl...

This test was taken the night I went to the ER. I just noticed it. Having only 10% remaining intestinal tract, means if I don’t drink at least 2gal of fluid a day, this happens. Catching a mild flu, that has me sleeping for 2 days, & not drinking enough, can actually kill me.

#ShortBowelSyndrome

Lessons in Grief Jenny shares key insights she's learned over the last year after losing her mama.Life's a Polyp explores daily life with chronic illness caused by two rare d...

"Jenny shares key insights she's learned over the last year after losing her mama. LifesAPolyp explores daily life with #ChronicIllness caused by two rare diseases - #FamilialAdenomatousPolyposis and #ShortBowelSyndrome.": buff.ly/oDCzGMm

#RareDisease #grief

Ironwood crashes down as FDA seeks new phase 3 trial Shares in Ironwood fell by a third after it revealed the FDA is insisting on a new phase 3 trial of its short bowel syndrome therapy apraglutide.

NEWS: Shares in #IronwoodPharmaceuticals fell by a third after it revealed that the FDA is insisting on a new phase 3 trial of its #shortbowelsyndrome therapy before it can consider approval.

pharmaphorum.com/news/ironwoo...

New article you should know by
“Outcomes of #Children With #ShortBowelSyndrome” by Tsang et al.
Full text: tinyurl.pulse.ly/cf1xmlk2uy
#SoMe4PedSurg #pedsurg #multidisciplinary #intestinalrehab
#jpedsurg #MedEd #FOAMed

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@cincychildrens.bsky.social

Real-world experience of Teduglutide use in adults with short bowel syndrome: A seven-year international multicenter survey Teduglutide is a glucagon-like peptide-2 analogue used to promote intestinal rehabilitation and decrease the dependence from intravenous supplementation (IVS) in patients with short bowel syndrome and...

Teduglutide and #shortbowelsyndrome #intestinalfailure in the real world. Treatment at specialized
centers associates with better outcomes www.clinicalnutritionjournal.com/article/S026...

I have learned a lot of coping skills and developed a lot of tools to manage not only to survive but thrive as a rare disease patient Jim Kuhn CREST Syndrome, Sarcoidosis

Finding my voice guided me to finding my rare disease community Jenny Jones Familiar Adenomatous Polypsosis, Short Bowel Syndrome

As challenging and painful as my journey has been, I've become stronger, wiser, and more self-aware because of it. Jessica Fraccalvieri Turner Syndrome

My advice to anyone struggling with autoimmune or Autoinflammatory diseases is to not give up. Although I live with these health concerns, I stay optimistic for better treatment. Jenni Weaver Pustular Psoriasis

The writers in Kaleidoscope #RareDisease Stories show strength, courage, creativity, &, even through fear, hope.
~🦋
https://a.co/d/3HxjJ6P
Proceeds donated to NORD
#CREST #sarcoidosis #FAP #ShortBowelSyndrome #TurnerSyndrome #PustularPsoriasis
#ChronicIllness #Rare #SpoonieSky #ZebraStrong

That feeling when you're very pleased with what your severely limited bowel has achieved today. #shortbowelsyndrome

Financial support for #ShortBowelSyndrome patients.
👇
rarediseases.org/rare-disease...

I have #IBD related inflammation which can't be treated or operated on, all down to complications of previous surgery and #ShortBowelSyndrome. Feel like my body is giving me the middle finger when I had been finally feeling more positive. /3

Merry Christmas from Nate the Great #DownSyndrome #Theluckyfew #Shortbowelsyndrome #merrychristmas #bluesky

I wish digestive system version 3.0 came with some kind of user manual or troubleshooting guide. #shortbowelsyndrome