>What the Hell Is Wegener’s Granulomatosis and Why Should You Care?
(Matt, Myself, and my sister Sara at my HS graduation in 1999)
WG usually affects middle aged folks, but can affect people of all ages, such as my brother. He had flu-like symptoms for a short period of time, but the pediatricians did not think to investigate it further and left it at that. Around the beginning of February he began coughing up decent amounts of blood, which the pediatrician dismissed as a severe part of the flu. He laid on the couch all day, coughing up blood for a few days until my mother took him to the hospital. Even the doctors there weren’t too sure of what was going on. By the time they figured it out, it was pretty much too late. The auto-immune disease had been tearing up his kidney and lungs for a while, hence the blood. He was hooked up to more machines than I have ever seen in a hospital room, and he stayed in an induced coma for 2 weeks and died on February 21, 2000.
The other symptoms that seem so insignificant that he experienced were nose bleeds, which even I had often as a child, and joint pain, which actually was once misdiagnosed as a simple twist of the ankle for Matt. The other symptoms are fever, fatigue, malaise, loss of appetite, weight loss, night sweats, changes in color of urine, and weakness. Nothing on that list is huge enough for someone to even consider such a horrible disease, but together or even a few may help point to some form of Vasculitis, such as WG. The WG Association even states that one third of patients may have no symptoms at the onset of the disease. How scary is that?
Granted WG only affects 1 in every 20,000 to 30,000 people, but if you’ve seen what it can do, you pay attention for signs out of fear. People can live with WG if it is caught early enough, so it’s important for doctors and others know at least a little about this disease. For more info., the press release from the WG Association follows below, or go to their website at http://www.wgassociation.org.
Wegener’s Granulomatosis Awareness Week
The week of October 2-8, 2005 has been designated as “Wegener’s Granulomatosis Awareness Week throughout the world.
Wegener’s granulomatosis (WG) is a chronic, autoimmune, vasculitis disease that affects about 1 in 20,000 to1 in 30,000 people. The disease strikes people of all ages.
There is no known cause of Wegener’s; but it is not contagious, and there is no evidence it is hereditary. The disease affects the sinuses, lungs, kidneys and other body organs. About 90% of patients have symptoms of a ‘cold’, ‘runny nose’ or ‘sinusitis’ that fail to respond to the usual therapeutic measures. Other symptoms may include inflammation of the eyes, hearing problems, pleuritis, rash, fever, lack of energy, weight loss, fatigue, arthritic pain, night sweats and blood in urine.
Diagnosis of the disease is made by the ANCA blood test, tissue biopsy or other laboratory findings. Early diagnosis is key to preventing permanent organ damage. Wegener’s can be fatal if not treated.
The Wegener’s Granulomatosis Association is an international non-profit organization with over 5,000 members in 58 countries. The group offers support and comfort to Wegener’s patients and family members through education, awareness and research.
For more information on the disease please call 1-800-277-9474 or visit the group’s website: http://www.wgassociation.org
>Thanks for sharing this article with us Jim. I am sorry to hear that you lost your brother, I never knew that before. This is a terrible disease that more people need to hear about and I will pass it on to others that I know. Thanks again. You are such an inspiration to many of us.
>Yeah, thanks for sharing. I just got out of the hospital a little over a week ago. They aren’t 100% what form of ANCA Vasculitis I have, but they think it may be Wegener’s. My kidneys seem to be okay, but my lungs were filling with blood and I couldn’t breathe for a while without being on pure oxygen. Things seem to be going okay now. Only time will tell. Thanks again.
>Found this searching for stuff on Wegener’s. My dad was diagnosed about 18 years ago, and is back on hemo waiting for his second transplant. Thanks for writing!
>Thank you for sharing. I’m a medical student studying for my Board exam next week and your message will never let me forget what Wegener’s is.Thanks.
>Thank you for taking the time to educate us on this disease. So many times in the past I’ve had relatives sick and the dr’s had no idea what the problem was. My oldest son obviously (to me) had type 1 diabetes, but it took the dr.’s five weeks and an eventual stay in ICU to diagnose it. Now, the next time one of them has a nosebleed I may freak out, but at least I have learned something tonite. Thank you, and I will be buying Matt a few drinks…