Jejunal Atresia is a rare genetic disorder caused by the partial absence of the fold of the stomach membrane that connects the small intestine to the back wall of the abdomen resulting in the jejunal twisting around an artery of the colon.
Hi Nathaliesayers, My daughter who just turned 5 about a month ago was born at 32 weeks due to jejunal astresia. She has surgery the day after she was born and hasn't had any problems ever since ( knock on wood). I am not sure if she will have any problems as she gets older but as of right now, she is s picky eater, which is probably typical at her age. You may email me at email@example.com, if you have any questions or would like to chat.
Hi Nathaliesayers, I just saw your message. I am sorry that nobody replied to it and I just wanted to tell you that if you still need to talk, you can contact me at alexdido23@ gmail.com I hope you got some answers regarding your little boy's symptoms. One thing is for sure, don't always listen to what your doctors say, follow your instincts as docs don't know everything. I would love to share my experience with you too. I still struggle a lot with my 21 months old girl who was born at 32 weeks with jejunal atrasia and had 1/3 of her gut removed. She does not suffer from constipation but vomits all the time (sometimes twice a day) almost everyday. She also suffers from reflux and It breaks my heart to hear her every night moaning with pain. Anyway, if you read me, please get in touch x
Hi I'm sorry I have just found this and I'm not sure anyone is still around and using this site but I'm a pretty desperate mum so I'm going to ask anyway.....my son is three and born with jejunal atresia. Surgically repaired at 3 days old. He is dairy and soya intolerant so diet is restricted. He is currently having a lot of trouble going to the toilet. He's on three different laxatives, but the doctors are saying it's not related. He's constantly crying he needs to go but just can't. It takes days. He says he tummy is "big". He also has development delay and they are looking into autism so I feel they are shrugging it off as a behaviour thing. I've been told from his doctors that basically you either get short gut syndrome from the surgery or your fine. There is no in between.... So I guess I'm asking if you think I'm just a paranoid mum or if he really could be having effects from the atresia. As you can imagine it's not been easy finding other mums or anyone for that matter who even knows what this is to ask! So I hope someone is still here :/
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.