Cryptogenic Organizing Pneumonia is a rare disorder characterized by inflammation of the bronchioles and surrounding lung tissue.
My name is Terri. In February of this year I went to the ER at the hospital in my small town thinking that I had a kidney infection because my back hurt. They told me that I was starting to develop pneumonia (from xrays). I went home on antibiotics and an inhaler. I saw my physician the next day and she didn’t change anything. Five days later I was back in the ER because I couldn’t breath. Now I had double pneumonia. They admitted me and that’s all I remember BUT family says that in 24 hours a lot changed. My oxygen level dropped to the point where I was hallucinating. Walking around the hospital telling everyone I was saddling my horse to go to a pawn shop. 24 hours after that I went on a vent and was being flown to a bigger hospital (Miami) to be put on E.C.M.O. (Extracorporeal Membrane Oxygenation) tovbypass heart and lungs and to oxygenate my blood. I was in ICU for over 3 weeks before they let me finally go home on oxygen and told me I had ARDS. (Not a surprise) I was home three weeks and was woke up by my fiance because he could hear me wheezing. My O2 sats were in the 60 to 70’s and I was 911 to the hospital. Once I was stable I was then transported to a bigger hospital (Miami again) for testing and biopsies because ALL tests done on me came back normal. They could not figure out why I was getting pneumonia because nothing came back wrong. Finally I was diagnosed with Cryptogenic Organising Pneumonitis (COP). To top it all off I acquired ARDS from being on the vent.
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.
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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.
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