New Memeber from Orange County, CA
I am the mother of a beautiful daughter with WG. She was diagnosed at the age of 15 after MANY years of nose bleeds, sinus infections & colds that never seemed to respond to antibiotics & doctors that kept telling me I was looking for something that wasn’t there! Well that something was there and it almost took my daughter’s life. I feel she was born with this disease and showed signs since she was 1 year old, but went undiagnosed because I believed & trusted the doctors and didn't listen to my maternal instinct. I am adamant that stress triggers this disease because in November of 2005 her father passed away in a car accident and the amount of stress and emotions she went through were almost unbearable and she became very ill. By March of 2006 she was diagnosed with limited WG to her sinuses, confirmed by biopsy from ENT. We went and saw all the other specialists and were told the disease had not progressed to any other part of her body. Again she was under tremendous stress being told about the disease, the drugs she would have to take (prednisone & cytoxan) and their nasty side effects and within 2 months of her initial diagnosis she developed a cough and was diagnosed with full blown WG that went on a horrible attack to her lungs.
4 years later, hundreds of bronchoscopes, months spent in ICU & thousands in medical bills she is still here with me. This disease has taken so much from her, probable infertility, she is deaf in her left ear, she has "lost" her nose, stents in her lungs, loss of lower right lobe & upper left lobe and the loss of her childhood & loss of "friends" that were either too afraid to stick around or she scared them away because she was so embarrassed about her moon face. The past few years have been a battle, life support twice, in and out of the hospital (more in than out). Most recently 11/5/10 she began to cough up large amounts of blood (something we never experienced before) and was put back on life support, only this time it was not her disease, it was her stent that had punctured her lung requiring her to have 6 arteries emblemized and a stay in ICU for 5 days. She is my fighter and she has a wonderful team of doctors who never gave up on her and fought for her as if she were their little girl.
Our current fight is to get her qualified for disability so that she can collect on her father’s social security and have financial help since it's been difficult for her to hold down a job because of all the hospitalizations & getting sick because the Cellcept slows her immune system & she catches everything & I don't need to touch on her energy level, or lack of.
My heart goes out to any human being that is touched by this ugly disease & I can't express how happy I am that I was able to stumble across this amazing website. I look forward to sharing & communicating with other people whose lives have been touched by WG. I hope to learn and become more educated on this disease by those who know the most about it, the survivors! And I hope that I am able to meet people local to where we live so that my daughter can sit down and talk with someone who knows what she is going through, because if you don't have the disease, you have no idea how it feels and it has been such a lonely experience for her.
Wishing you all the very best.
"What lies behind us and what lies before us are tiny matters compared to what lies within us ".- Ralph Waldo Emerson
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