Rare Diseases Community
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Avatar universal


im 26yrs old and starting in august of 09 i was sick with wut i thought was a summer cold towards the end of the month i started coughing up blood and not just a little it was all blood,i went to the doctors and i was told i had bronchitis got antibiodics and a inhailer and sent home well it didnt get better so i went back again and they did a chest xray and said i had bronchial phnemonia gae me more antibiodicts and another inhailer and sent me home then one day it got the point i couldnt breath went tot he ER the did a chest xray and a CT scan on my chest and addmitted me into the hospital for double phnemonia for a week i got sent home then 2 months later, dec of 2010 i was so weak and couldnt breath and STILL coughing up blood so i went to a different ER they did sum tests and imidiatly told me i needed a blood tranfusion i ended up having 5 of them then i was transported to a diff hospital and in ICU 4 2 days it was touch n go they werent sure if i was gunna make it they ran a bunch of tests and admitted me back in the hospital i was finally diagnosed with goodpastures disease i went threw 26 plasmapharisis sessions and have been on prendisone and chemo and antibiotics and waterpills for 5 months now needless to say the antibodies are gone and im doing better but i was wondering if anyone else has had this or know any support groups out there
2 Responses
Avatar universal
Hello...unfortunately not many people have good pastures syndrome and unfortunatle the only reason i know about it is because my 8 year old daughter passed away from this in 2008. It is very good that you got a diagnosis...it is so rare only 1 in a million have it...so it is hard to get a diagnosis. My daughter was not diagnosed until she passed. Did this just affect your lungs or did it affect your kidneys also? It affected my daughters kidneys and lungs. She just all the sudden got really sick..she never coughed up blood or peed blood. I am happy to hear that you got this diagnosis because it can be very treatable. Any questions just ask..i been researching for awhile!
Avatar universal
How are you? Goodpasture syndrome is indeed a rare disease that can involve rapidly progressive kidney failure along with lung disease. It is good that early diagnosis was made. The main goal is to remove the antibodies from the blood like plasmapheresis.
Corticosteroids and other drugs that suppress or quiet the immune system may also be used. It is important that you monitor and control your blood pressure to delay kidney damage. Avoid exposure to certain chemicals, including hydrocarbon solvents like glue. Ask your local hospital or health department if there are any available support group in your area. You can also check the net for support groups. This link may be helpful: http://www.*************.org/c/Goodpasture-Syndrome/support-group
Take care and do keep us posted.
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