Supporting and educating patients and families on the intestinal failure,
intestinal rehabilitation and intestinal and multivisceral transplantation journey.
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Hello Summer!
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Summer can be fun! Remember to use sunscreen and stay hydrated!
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Here are our events this summer:
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Caregivers Support Groups:
June 10, July 15 and Aug 12
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General Support Group: June 24 and Aug. 26
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Patient Only Support Group: July 29
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All At at 7 pm ET, 6 PM CT and 4 PM PT
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​Oley Conference July 10 - 13 Madison, WI
IRTxU has a session, and we will have a group meet! Look for an email with details on where and when. Hope to see you!
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Community Perspectives:
We asked members of our Support Group this question:
What aspects of your day-today expereinces as a patient do you think would most surprise your medical team?
Providers don’t understand the time commitment that being sick takes. So much time, to coordinate refrigeration, supplies, prescriptions, it’s a full time job behind the scenes to be a sick person and such a burden
A little empathy goes a long way.
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​anger begets anger
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frustration begets frustration
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hope begets hope
Pain is not a
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COMPLAINT
We don’t get a "get well/healing"
​I just want a full life, even if it includes PN.
No other doctors/providers want to treat me, I’m too complicated. It’s hard to find coverage even in other specialities.
Some diseases are easier than others, in IF we have to fight for health care and providers don’t understand the weight of it
I am not a burden
The TIME:
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hold times
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insurance
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mental energ
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TPN doesn’t connect itself (“magically connect”)
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finding orders
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making sure prescriptions are there, etc…
I am not only a patient, I am my own caregiver
I’m not going to the hospital for fun.
The EXPENSE
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of being sick
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so much insurance doesn't cover
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Clorox
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paper towels
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supplies past what they think you need
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everything ELSE
Our Impact
Webinars
We regularly hold expert led webinars for the benefit and education of our community.
Signup for our next webinar.
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Advisory Board
Our Medical Advisory Board has 20 members from 11 intestinal rehabilitation and transplantation centers across the world.
Members
Become one of 300+ members to get access to our full library of downloadable resources and webinars anytime!
Signup for free.
"Intestinal Rehab & Transplant Unwrapped and educational programs are a vital resource to the community for intestine transplant and short bowel syndrome. It is so important that patients have educational resources and ways of networking with others and be able to gain a greater understanding of their disease process, a greater understanding of the expectation of what transplant would bring, and a greater resource and ability to reach the larger community around them." ~Dr. Syed-Mohammed Jafri, Henry Ford Health Systems~ and Member of Intestinal Rehab & Transplant Unwrapped Medical Advisory Board.