About Wegener's Disease
The autoimmune disease called Wegener's is also known as Granulomatosis with Polyangiitis (GPA) or Wegener's GPA, or Wegener's Vasculitis (inflammation of blood vessels.) Sometimes it is called ANCA-Vasculitis named after a lab test that is positive for some Wegener's patients. Basically, the inflamed blood vessels cause tissue and organ damage, often in the lungs and or kidneys. This damage causes the symptoms of Wegener's. Please see the symptoms section below. It is not an inherited disorder, but the exact cause is not fully understood. GPA often goes unrecognized and therefore researchers believe it is under-diagnosed, making it difficult to estimate it’s frequency. It is very important to get the earliest possible diagnosis. Undiagnosed Wegener’s can become life-threatening.
About Us
Watch 4 Wegener's - It Could Save a Life
Founded in 2022, Watch 4 Wegeners was started by the loving family members of Sarah M "River" Whitmire, who died from undiagnosed Wegener's Disease. Wegener's is also called Granulomatosis with Polyangiitis, or GPA. It is an autoimmune disease that causes inflammation of small and medium sized blood vessels leading to organ and tissue damage, most often in the respiratory tract and kidneys. The core of our work lies in the continuous passion and dedication we bring to educating the public and working with health care providers, to avoid harmful, even fatal delays in the diagnosis of Wegener's GPA. Please join us by supporting our efforts to save the lives of others.
Signs + Symptoms
The many symptoms of Wegener's GPA can vary. The inflammation of blood vessels often causes damage in the respiratory tract and kidneys. The symptoms in the respiratory tract can resemble a cold, allergies or infection. There can be a persistent runny nose, nasal crusting, sinus pain, and nasal obstruction or congestion. There may be nosebleeds and hoarseness. Individuals may develop recurrent middle ear infections. Saddle sign (a collapse of the bridge of the nose) may develop. If the lungs are affected a cough or coughing up blood can develop. Sometimes the upper airways can be affected for years before other symptoms develop.
If the kidneys are affected, it may progress to kidney failure.
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Vision can become blurry.
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General symptoms can include weakness, fatigue, joint pain, loss of appetite and unintended weight loss.
Delay in diagnosis can lead to extensive tissue damage or even death. The diagnosis is made through patient history, clinical examination, lab tests and specialized tests. In our experience, the simple question, "How do we know this isn't Wegener's Disease?" could have saved our daughter's life. Sarah went to class on a Friday and then died on a Monday night. No one recognized that her progressing "allergy symptoms" or her supposed sinus infection, was really Wegener's disease. Her symptoms were not recognized in the hospital. She was not diagnosed until after she passed away. THIS is what we are fighting against. We wanted her to have so many more birthdays. Please educate everyone you love about Wegener's Disease and that it is often misdiagnosed. Please visit the National Organization for Rare Disorders (NORD) at rarediseases.org and The Vasculitis Foundation at vasculitisfoundation.org.