History of my illness

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I am a 40 years old mother diagnosed with melkersson rosenthal disease i've been sick for 13 years .it started when i delivered my second son in 2005 after 6 month.it started with swelling of my lower left lip and then the journey of suffering been to many doctors been doing multi and many tests gave me cortisone pills for like 4 years without doing any positivity tried a cocktail of pills last was cortisone needles in my lips now my lips and a part of my face are swellen .stoped all treatments ...pls. can someone help me i need to be updated on a new treatment if there is any....i'm very shy to go out of home it's so embarrassing how pple look and stare ...lost my job...was a really a turnover ...i have a small baby ...kindly communicate if there is a way.thank u