Greetings my fellow Weggies! :)

Posted , 3 users are following.

Hello all!

My name's Ryan, and I was diagnosed with WG in Dec 2010. Rushed into hospital on Xmas day, of all days!

Since then, I've had a few ups and downs, but my condition has mostly improved.

I've tried to give a little bit back by creating the Wegeners UK website, to try and link to resources like this site.

After 15 months, I'm now at the stage where I've been told I can return to work, in a part time capacity, but have no idea what I can do. All the jobs I used to do involved some sort of manual handling, which is out of the question for me these days, so looks like I've got to retrain!

What have you found to be the most difficult part of dealing with this illness?

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  • Posted

    I was diagnosed 8 weeks ago since January I have been ill on and off I have lost part hearing in my left ear and damage to my nose. I feel the worse thing is I was stopped in tracks with this. Feels like I am ok for say 4 weeks and then it kicks in again and I am off work again for 2/3 weeks at a time. I work in primary school and love the kids and job I do is very rewarding. I have started a Diploma in early years and I have had to take break in learning because of operation on my sinus. I can't hear What children are saying and it is impossible to teach young kids when there is a break in communication. Loss of confidence too. I also have two young boys of my own and feel I am really missing them and my partner. I hope I get on some even keel soon I am taking prednisone 20g at present and being seen at The Hammersmith Renal clinic in London. I love life and the people I have in it I just I go on step forward to steps backsad 
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    • Posted

      Hi there, I feel for you, my 14 year old daughter was diagnosed a few weeks ago, was on 60mg prednisolone, and MMF and now rituximab. She has missed months of school when she is meant to be studying for GCSEs. Yesteday we had lots of tears about the way she feels about the side effects of the steroids. We too are feeling at the moment that it is all doom and gloom, it feels like a prison sentence and I mourn the fact that I no longer have a healthy and happy child. I hope that you can take some comfort from knowing that there are people out there who understand how low this horrible illness makes you feel x
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    • Posted

      Thanks for replying I have been reading lots of different case studies and think it's about trying little by little because it is so unknown and people have not heard of it you do feel like you are a bit invisible and don't know where to turn. First things first concentrate on treatment and getting her to remission. I am gutted about the break in learning but we can go back to our studies when we are well enough and we will be. I am sorry your daughter has the horrible disease and it is ok to feel angry about it. I feel guilty for not being able to be as active with boys and I know it is GPA that marking feel that way but I have decided to still make time it just has to different than before and let know I don't love them any less but the steroids do make you tearful and do snap but we are still us not the illness. As a mum it must be so difficult you just want to put yourself in there shoes and take away the pain for her. Just keep supporting her she will come the other side take care of yourself too x
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