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rare disease

SherryBerry
Here since: Nov 30, 2007
Female, 39
Secretary
Languages: English

I am a single mother raising two teenagers.  Im not on aidpage for no one particular reason, there are many.  Most of us on here are going and/or have gone through some hard times.  I am in hope of meeting new friends and lending a shoulder if someone should need some emotional support.  In return you may find that I am in need of your shoulder as well.

 

I am trying to live with the fact that my 17 year old son has a rare disease known as Wegeners Granulomatosis and there is no cure.  This disease was caught in some of the last stages, therefore he is catagorized as terminal.. So, I can feel everyones pain who is having a trying time as well..  Maybe this site will help keep our minds off of things for a bit, thats what I am hoping for..  If there is anything I could do for anyone I would, I can offer you a friend or just someone to talk to..

 

If there are any doctors or medical proffesionals on the site, I would be so grateful if you could tell me more about this disease.. Thanks

hard working christian family in trouble due to rare disease

I was recently diagnosed with a rare autoimmune disease termed Dermatomyositis.  This disease eats away skin and muscle, much like osteoporosis eats holes in bone.  This is a very bad disease, causing severe pain and muscle weakness.  I have been unable to work since August 2006.  I have spent 6 wks in the hospital, on and off, since then.  I went from being a hard-working nurse, spending time with my family, such as camping, four-wheeler riding, etc, to  being unable to walk very far without assistance, difficulty swallowing, breathing and many other problems.  My husband of 14 years, works but does not make enough to pay all the bills when we've been budgeted for two incomes. We have two beautiful daughters and are just good people going through a really bad time.  All of the savings is gone now, we've sold all that we can and we have no idea how to make it.  If there is anyone out there that can help us, please do so ..... my e-mail address is darianep@yahoo.com

I Understand Your Pain

I am a single mother raising two teenagers.  Im not on aidpage for no one particular reason, there are many.  Most of us on here are going and/or have gone through some hard times.  I am in hope of meeting new friends and lending a shoulder if someone should need some emotional support.  In return you may find that I am in need of your shoulder as well.

 

I am trying to live with the fact that my 17 year old son has a rare disease known as Wegeners Granulomatosis and there is no cure.  This disease was caught in some of the last stages, therefore he is catagorized as terminal.. So, I can feel everyones pain who is having a trying time as well..  Maybe this site will help keep our minds off of things for a bit, thats what I am hoping for..  If there is anything I could do for anyone I would, I can offer you a friend or just someone to talk to..

 

If there are any doctors or medical proffesionals on the site, I would be so grateful if you could tell me more about this disease.. Thanks