Chronic Intestinal Pseudo-Obstruction is a rare disorder of gastrointestinal motility where coordinated contractions (peristalsis) in the intestinal tract become altered and inefficient. Very complex to diagnose, there is currently no cure or remedy. In 2000, two young girls whose mothers were infected with this disease decided to unite their efforts and create the Association of Chronic Intestinal Pseudo-Obstruction (CHEP) to support families who, like themselves, had to deal with this disease, with the added goal advancing research and knowledge on the subject. This remarkable cause requires your attention and support!
Chronic Intestinal Pseudo-Obstruction (CIPO)
CIPO can occur at any age. Its symptoms are as diverse as nonspecific vomiting, stomach pain, nausea, constipation, diarrhea, and urinary problems. It is very difficult to diagnose, especially since it is still little known, even to the medical profession. Even when surgical exploration is done, a surgeon will often find no identifiable element leading to a clear diagnosis. Invasive and complex tests are usually necessary.
Because of its symptoms, the disease often plonges patients and their families into self-enforced isolation, which only exacerbates their distress.
For now, no curative treatment exists. The only answers that can be brought to patients are nutritional, medicinal and surgical, and these must be precisely tailored to each patient according to the stage and evolution of the disease. However, these solutions are still largely unknown and little implemented. An enormous effort of information dissemination is required. This is the principal mission of the association CHEP.
Actions and goals of the association CHEP
For over 10 years, the association CHEP has fixed itself ambitious missions that cover all the issues raised by this disease.
Throughout its history, the association first seeks to provide moral and practical support to patients and their families, hopefully breaking their isolation and improve their management and administrative medical care. The highlight of this action is the organization of an annual weekend meeting where more than a hundred families have the opportunity to meet and share in a comfortable and relaxing setting, providing also an opportunity to speak with representatives of the medical professions who are always present.
CHEP also aims to raise funds to advance research in the various structures that work on the disease, such as L'INSERM in Montpellier, France or multidisciplinary coordinations at the Hospital Robert-Debre of Paris, in collaboration with the Reference Center for Rare Digestive Diseases. This work has already produced many articles, one of which has been published in the prestigious journal Gastroenterology. Furthermore, the association created, in 2005, with the help of a Généthon, a DNA bank for clinical research, that is regularly given samples from voluntary patients and their families.
Finally, the association CHEP does its utmost to improve awareness of this disease, both to the public (participating in numerous TV documentaries and talk shows), and to healthcare professionals, through its participation in numerous seminars and conferences.
Founded and run by dedicated and active families of patients, the CHEP association is a model of human solidarity and mobilization that is absolutely necessary to defend, now, more than ever. If you want ot help this remarkable structure, at no cost to yourself, add the browser extension Shop Fairly, and a portion of the amount of your purchases online will be automatically refunded to CHEP.
Founded in 2000 by two mothers, each with a 10-year-old girl suffering from Chronic Intestinal Pseudo Obstruction, the CHEP association now has more than 200 members in France, Belgium and Canada.
Its main objectives are:
- emotional support to patients and their families
- much-needed assistance with administrative procedures to obtain recognition of disability, leading to compensation for the essential care they need.
- financial support for medical research into CHEP as well as the creation of a DNA information bank
- disseminating information about this disease among the general public, to patients and their families, and, of course, the medical profession as a way of improving outcomes.
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