Hi, my name is FionaG! eosinophilic esophagitis condition

FionaG
FionaG Online Community Member Posts: 4 Listener
edited December 2024 in Rare, invisible, and undiagnosed conditions

I’m new here and looking for support from other parents,my child has a rare condition and we’re finding life challenging at the moment.

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  • Holly_Scope
    Holly_Scope Posts: 4,278 Scope Online Community Coordinator

    Hi @FionaG Welcome to the community!

    There are lots of lovely and helpful community members who are always supporting one another with advice etc.

    I see @Bluebell21 has already beaten me to asking for some additional information, and opened the floor for any questions. 🙂

    I hope you find your time on the forum helpful.

    All the best,

    Holly.

  • FionaG
    FionaG Online Community Member Posts: 4 Listener

    Hi @Bluebell21 and @Holly_Scope so my daughter has a condition called eosinophilic esophagitis which means her body is attacking her esophagus. We’ve had two emergency stays in hospital recently, one by ambulance, there is no cure and drying to stabilise her symptoms at the moment. She has developed huge anxiety and fear of many many things and isn’t currently in school very often as exhausted also, I’m just finding it all a bit hard and don’t know any other parents with a child with the condition to chat to.

  • FionaG
    FionaG Online Community Member Posts: 4 Listener

    hi @Bluebell21 unfortunately the staff have mostly never heard of it yet and the consultants know little about it yet so definitely no other parents. I’ve had a look at the Guts Uk before and read so much about it all, I am now an expert! There are a few Facebook groups but these are mainly in America and to be honest reading it is often worse but there is a UK one and I have found two parents in Scotland on it but they don’t seem to be up for chatting.

  • FionaG
    FionaG Online Community Member Posts: 4 Listener

    thank you @Bluebell21 it helps just knowing that there’s other people here to chat to that understand the stress of it all :)

  • Holly_Scope
    Holly_Scope Posts: 4,278 Scope Online Community Coordinator
    edited December 2024

    Hi @FionaG thank you for being so open. I'm really pleased that you've joined the community here. As @Bluebell21 has said, there's a great community of people who all support one another, and have a great wealth of information.

    I hope you don't mind me doing this, but I've updated your title slightly to include the condition and moved your post in to a category within the community named "rare, invisible, and undiagnosed conditions" to make it easier for others who may have similar experiences to find your post. If you have any issues, please let me know and I can revert the changes.

    Thank you again for being so open. I hope that you get out of the community what you need.

    And make sure to take care of yourself as well. ❤️

    Holly.

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