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Jennifer Brown's profile
« Hi, I'm Jennifer and I have MWS and a hearing loss (due to the MWS). I'm on Illaris now and doing very well.
I'm an author and dog lover and love to meet new people and chat. Feel free to share with me. »
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Recent topics
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published 5 months ago
New, introducing myself Hello, my name's Jennifer. I just found/joined this site. I was born with MWS. My mom says I came out covered in hives, but the doctors told her it would go away as I grew up. Wow, well that d...
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Recent replies
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published 5 months ago
In reply to Canakinumab (Ilaris) muckle wells : Alison,
Hello, I'm new here, just joined today. My name's Jennifer. I was born with MWS but wasn't properly diagnosed until I was 20 years old. I'm now 26. When I was diagnosed...
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published 5 months ago
In reply to News story from Decatur, Alabama about a family with CAPS: This story is touching, thanks for sharing. :)
~ Jennifer
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published 5 months ago
In reply to Canakinumab (Ilaris) muckle wells : Karen, thanks so much for letting me know about the ICP! I had no idea that elevated brain pressure was even a part of this. I will read through all the forms and ask my doctor about it at my next ...
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published 5 months ago
In reply to New, introducing myself: Karen - I read your other reply and am going to talk to my doctor about this. I Googled ICP to get a little more familiar with it. As a child and up until I got my first injection, I did have times...
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published 5 months ago
In reply to New, introducing myself: Paul - thank you so much for responding. Your story is amazing. I can't imagine going 60 years with full MWS symptoms. I don't know how I even survived for 20 years. But I'm gratefu...
