Please note: The Help Rachel Breathe website had a bit of a catastrophe. All of its data was lost when changing webhosts. Undaunted, we’re rebuilding it from scratch and it’s undergoing some updates at this time. Parts of the website may not be fully accessible or working optimally and may change during this process. But we’re working hard to get the majority of things back online, and we’re making pretty good progress! Additional updated information will be added, as well. Thanks for your understanding and patience during this time – and please check back often. 🙂

Rachel on a “good” day.

Thank you for joining our efforts to Help Rachel Breathe! Rachel Phillips was formerly a ballet dancer who performed with the Royal Ballet in London, the Kirov in St. Petersburg, Russia and other major companies in the US and abroad. Her world came to an abrupt halt when she began to have complications from a rare connective tissue disorder. The form of airway collapse she suffers from is extremely rare due to the fact that it is so diffuse – meaning that it isn’t just one small section of her airways that collapse. Instead, her airways collapse from her larynx, through her trachea, both

Rachel’s during her professional ballet career.

mainstem bronchi, and all the way down into the smallest airways into the lungs. At one time, a groundbreaking transplant seemed to promise hope for her situation but complications with the procedure were discovered and it was no longer a viable option – for this point in time (we still have hopes that the technology could be perfected in the future). She has waited several years fighting to stay alive as her breathing declined. Recently, a new option was presented by a surgeon who has consulted on her case since shortly after her diagnosis, and has the potential of improving Rachel’s quality of life. Read more of Rachel’s Story here.

LP Shunt surgical scar – just one of the countless surgeries she’s had to endure.

Check out the Medical Videos, Dance Videos, and Press Coverage in the Media section, as well as find out additional info about EDS. To see how you can help, please visit Want To Help. And check back for updates including a photo gallery and more. Thank you for stopping by.