Greetings to everyone in the LGDA community. A brief introduction, I am Gregory from Athens, and I am 39 years old now. I suffer from generalized lymphangiomatosis (GLA) of the abdomen and chest. In complications of the disease, I have had 4 surgeries in the abdomen, chest area, and two bronchial artery embolization.
I have been on sirolimus therapy for 4 years on low dosage. The repeated MRI and CT scans show a relatively stable condition.
The biggest challenge for me are my travels to countries beyond Greece to gather advice from specialist centres and doctors...such as in Spain and Germany, where I gave tissue for genetic testing which provides information about the disease and potential treatment options.
My advice to young people diagnosed with this rare disease is to not stop looking to get information and to look out for their partners.
Believe in you fighters!
NOTE: This update was originally written in Greek and translated with www.DeepL.com/Translator (free version)