Hi, my name is FionaG! eosinophilic esophagitis condition

FionaG

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.

Bluebell21

Hi @FionaG Welcome to the Community. I hope you enjoy your time on the forum. Any questions just ask.

Would you like to tell us a bit more about what you are dealing with so that another member dealing with something similar will be able to share their experience.

Take care.

Holly_Scope

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

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.

Bluebell21

Hi @FionaG Thank you for sharing further information. I have not heard of this condition before. When your daughter is in hospital are there never any other children on the ward with the same condition? This could be a way of meeting other parents with children with the same condition.

Have you looked at guts charity? If you click on the link and type in Eosinophilic Esophagitis in the I'm looking for box it brings up some information which might be of interest to you.

https://gutscharity.org.uk

It must be very isolating for you. I do not know if any other member has a child with this condition.

Take care.

FionaG

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.

Bluebell21

Hi @FionaG I am so sorry your daughter's condition is so rare and you are finding it so difficult to find other parents to chat to.

Perhaps keep going with the UK group on Facebook as another parent who is prepared to chat might join.

You can always chat to us here even if we do not have knowledge of your daughter's condition. We will always listen and offer support where we can.

My daughter had a one in a million condition and we had to travel to a specialist unit outside our area for her treatment. This meant we were able to meet other people from a larger area.

Sometimes it helped sometimes not as we all had different experiences. I like yourselves looked up everything I could find on her condition.

I am sure as a mother you will do the best you can for your daughter and as exhausting as it can be at times you will fight for the best treatment and life for her you can.

Take care.

FionaG

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

Bluebell21

Any time @FionaG even if you just want to rant at the unfairness of the system we all have to engage with. Take care.

Holly_Scope

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.