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Granddaughter is 27 with severe Wegeners and pnuemonia. Disease in her sinus, ears, tongue, lungs, saddled nose. Loss of hearing and numbness of right hand. Hospitalized for third time since diagnosis on Jan 13. Disease has moved very quickly and she now has pnuemonia. She is scared and is a single mom with young son. Have others experienced this severity and recovered?

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  • Posted

    Dear Ashley,

    I have personally experienced a very acute state when I was dignosed with Wegeners. I was hospitalized for over a month, of which half of the period was in the ICU( intubation after severe alveloar hemorrhage in both lungs). AFter discharge I was feeling better not to mention the inability to walk and all the swelling I had. Recovery is possible after such acute attacks and I hope your grandaughter will get out of this pretty soon and return back to you and her son healthy and strong. Just pray for her and reassure her that this period will pass and her son is waiting for her. (Actually when I was diagnosed I was also away from my 17 month old daughter for the 1st time).

    So please dont be scared and try not to show her this.

    I hope she will defeat this and be on her feet soon.

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  • Posted

    So sorry for your granddaughter and for you. I have had WG for nearly 20 years. Are you in the US? Try Googling DR PETER MERCKEL . He is number one doc in the world for WG. Based in Philly

    Good luck


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  • Posted

    So sorry to hear that your granddaughter is going through all of this.

    I don't know where you live, but if you live near Boston, Dr. Paul Monach out of Boston Medical Center is fabulous. Dr. Monach was personally trained by Dr. Merkel (wonderful man and awesome doctor) stayed in Boston when He left to Philadelphia if you can't get there.

    I hope she gets healthy very soon.

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  • Posted

    Yes, when I was 16 I was very ill, had severe conjuctivitis, joint pain, saddlenose deformity, bloody sinuses, purple nodes on all joints on my hands and suffered complete kidney shut down. After diagnoses and my first treatment, I awoke from a 4 month coma, sat up and ate a hamburger. I did stay in hospital for an additional 5 months as there were complications along the way, having a reduced immune system, but I have gone on to have 2 kids, presently have 8 grandkids (blended family) and have come out of remission 4 times, but still manage a full time job and a household. She can recover from this! 
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  • Posted

    Hi Ashley

    So sorry to hear about your granddaughter. Like everyone else has said, she can recover and come out on the other side from this terrible disease.

    I was diagnosed at the age of 16 in the middle of my GCSE exams! After various trips in and out of hospital, many many drugs later and a partial lobecty, I have never been stronger. I finished school and my A Levels, went on to completing an art foundation course and even university! For me, positivity and taking each day as it came made it ten times easier to cope. It's now been 10 years and coping has become second nature.

    I hope your granddaughter has a speedy recovery and can come home to both you and her son soon.

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