I was shocked when I found out about my son's LE. We all know this feeling. Being angry and constantly questioning "why me?". I felt left alone with my problem and completely helpless. Didn't know what to do and where to start from. So many sleepless nights with one question shouting in my head "WHAT NOW?"

On my first post here I got many replies that made me feel better. Everyone was saying stay strong, got contact numbers to other people, fb groups etc. You guys are fantastic. Small message for you can be a massive support for somebody else!

I would like to say massive THANK YOU to emmaphoebe9. She supports me every minute. Emma spent so much time already explaining everything to me, tells me step by step what to buy and what to do to help my son fight with LE.

Emmaphoebe9 you make me stay strong and I cannot even explain how much you helped us already.

Hope to meet up with you very soon! God bless you all!

3 Replies

  • Oh bless you. That’s so kind of you. I know the feeling you are feeling and it’s not often you can say those words as feelings are personal but the words I read were exactly how I felt. I’ll do my best to help. If I can help anyone not feel that dark alone feeling.....I’m one happy Mummy xxxx

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  • Hi, Slavka, I am new to this area but felt compelled to reply to your post as I too have 3 children all with primary Lymphoedema, My Eldest was born with visible swelling in her legs and it took over a year to get her diagnosed. I totally understand how you felt, I too asked many of the same questions. If I can support you in any way please feel free to get in touch. Kindest regards.

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