I was born in 1964, live near Hannover and had my first pneumothorax (collapse of the lung) in late 2000 at the age of 36. After a pleurectomy (surgical removal of the pleura) the diagnosis of LAM was made by histological examination.

Written by RareConnect team, published 6 months ago.

At this time my daughter was 12 years old and I was a single mother working full time as a teacher of nursing. In the following months my fears for the future were indescribable. However, in the following years, I had no further "tires" and the course of LAM was (and still is) stable so that gradually a sense of normality was set. The first few years I didn't take any medication against LAM. It was not until seven years later I had another "Pneu" this time on the other side of the lung but it could be treated by drainage. Due to losses in lung function I have decided to try a treatment with Rapamune the following summer, in consultation with my doctor. The drug slows the growth of destructive LAM cells but also makes the body susceptible to infections. Yet my oxygen levels are so good that I do not need oxygen administration. I hope that it of course stays that way.

My treatments are with Prof. Welte in the MHH (Hannover Medical School). To my well-being, among others, my physiotherapist and Osteopath have agreat share (apart from other things it unties these annoying blockages in the spine), my sporting activities (Nordic walking, daily gymnastic exercises at home and in the summer biking), my musical hobbies (drums , drums, drums ... ) and adequate sleep as well as regular and healthy eating habits.

Since my retirement in 2004 I am clearly relieved. Today, meanwhile I have been ill for 12 years with LAM and happily married for 10 years, I enjoy my life despite some limitations more than ever ..

Written by RareConnect team, published 6 months ago.

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