Lymphangioleiomyomatosis (LAM) Community

Learn how others live with Lymphangioleiomyomatosis (LAM) and share your story

Lymphangioleiomyomatosis in Cyprus

by Pieridou39 published 3 months ago

Hello everybody. My name is Maria and I write my story about Lymphangioleiomyomatosis with Tuberous sclerosis. I discovered my disease on 26/4/2012. On 27/3/2012 I was working and I didn't feel very well. In the night when I went home I couldn't breath, I was having dyspnea. On 28/3/2012 it was my day off and I had the feeling to fall down. When my husband came home I told him to take...

Heike

by RareConnect team published 4 months ago

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. 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 wer...

Cris from Brazil

Cris from Brazil

by RareConnect team published 6 months ago

My name is Cristina and I had Lymphangioleiomyomatosis (LAM) diagnosed 1 ½ years ago.

I Am electrical engineer living in Brazil , and at that time I discovered the disease, I was working. My contract ended on a Thursday and was admitted to the Mother Teresa Hospital on Sunday. Since then, I was hospitalized in last October for 18 days, and this year for almost 40 days, 4 of which were spen...

LAM Foundation : A Model for Rare Disease Advocacy

by The LAM Foundation published 10 months ago


Fighting not only against LAM disease, their vision is to accelerate the efforts finding treatments and cure for many more rare diseases. 

LAM Awareness video

by The LAM Foundation published 10 months ago


The short LAM Foundation awareness video describes disease progression, how people's life looked like before being diagnosed with LAM and their striving to find a cure.

Grazia

Grazia

by graziacanepa published about 1 year ago

Diagnosed with LAM after just 20 days: I consider myself lucky! My name is Grazia, I am 52 years old. I have not had children and I live in Genoa. My diagnosis of LAM dates back to January 2012 after a ten-day hospitalization for pneumothorax in the left lung and without having done a biopsy.

Before then I had not experienced any symptoms, only an occasional pain in the back at the shoulder...

Petra

Petra

by RareConnect team published about 1 year ago

During my school years I was not a jock, but attributed it to a lack of fitness. Bicycle rides uphill were later an ordeal, even with a modern 24-speed bicycle. My former husband could not understand that I could not reach the top of the mountain on the bike. I told him that it was not related to muscle power, but to my lungs. In the late summer of 1999, our daughter was only 1.5 years old, we ...

Constanza

Constanza

by RareConnect team published about 1 year ago

My name is Constanza and I received a diagnosis of LAM in June 2010, when I was 33 years old. At that time my children were aged 3 and 4, and hospitalization due to lung surgery was really hard. In addition, I worked in a small baby daycare founded by me here on my island of origin, Capri. The recovery has been slow. Today, I chose to no longer work and devote myself entirely to my family.
My...