Catamenial pneumothorax is a rare condition characterized by the collapse of a lung occurring in conjunction with menstrual periods.
Catamenial pneumothorax often involves endometriosis of the diaphragm, which causes the lung to collapse during a woman's menstrual cycle. It primarily effects women in their 30's and 40's, and is almost always right-sided. Many women afflicted with this condition have been previously diagnosed with pelvic endometriosis. Symptoms include chest and back pain, dizziness and shortness of breath, often accompanied by a crackling sound upon inhalation. Treatments include repair of holes in the diaphragm or removal of endometrial implants from the lung or pleura. Pleurodesis often accompanies video assisted thoracic surgery (VATS) to accomplish this repair. Additional treatments include hormonal suppression therapy using continuous birth control pills or gonadotropin releasing hormone agonists. Hysterectomy with the removal of the ovaries has also been a treatment of choice among patients and has shown some long term success. My twin sister and I were diagnosed with catamenial pneumothorax five years ago. We endured many thoracic treatments and continued to have collapses, until our hysterectomies. Since then, we have been collapse-free! Our experiences and additional information on this rare condition can be found at www.catamenial-pneumothorax.com Lizzieanddarcy
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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