Pericarditis is a condition caused by the inflammation of the lining surrounding the heart.
|Chest pain||Chest pain|
|Friction rub||Friction rub is when the parietal and visceral surfaces of the roughened pericardium to rub against each other. This is caused by inflammation of the pericardial sac.|
Am wondering if anyone else knows of a child who has this condition, believed to be the result of a "quirky" autoimmune system (dr.s words). My 12-yr.-old daughter has been suffering with this for 3 years now. The doctors are once again trying to wean her off prednisone, which is the only drug to date that has helped alleviate the symptoms and pain. She's home from sports camp for 2 days now, as her pain has kicked in once again and we are hoping to deal with it at home as opposed to rushing to hospital, where we will wait for hours on end and most likely have her prednisone bumped up again significantly. She's a very active and happy girl who has lots of friends and interests but I've always felt it would be wonderful to find another child who suffers from this or similar condition. What a fantastic idea to create this website, am encouraged that other people are in the same boat, although it's sort of frightening to think how many rare conditions are out there! Thanks for listening, hope to hear from someone...
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.
She is taking prednisone, a steroid which the doctors are trying...
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.