Looking for information about Pulmonary Lymphangioleiomyomatosis

Posted by user_Leslie @user_Leslie, Dec 28, 2015

My bestfriend was just diagnosed with Pulmonary Lymphangioleiomyomatosis, a very rare fatal disease requiring lung transplant. She lives in of the Canary Islands by Spain. The government there has not authorized yet for her to receive the only FDA approved medication to help her breath, Sirolimus. My question is- how can I help her from here. Is there an organization that I can contact to help her get the medication?

Hi, @user_Leslie.

You may try looking into the World Lung Foundation, http://worldlungfoundation.org/. Also, in case it’s helpful for your friend, here is a link to the International Patients section on the Mayo Clinic website http://www.mayoclinic.org/departments-centers/international/appointments. Here you can find contact information, information about financial services, language services and more.

Has your friend visited Mayo Clinic before?

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