Watch 4 Wegeners

Mission Statement

The mission of Watch 4 Wegeners is to teach the public and providers about the importance of early recognition and diagnosis of Wegener's Disease, also called Granulomatosis with Polyangiitis (GPA.) GPA is a rare autoimmune disease that attacks small and medium blood vessels causing tissue and organ damage. Unfortunately, it can take years to get a diagnosis and sometimes the diagnosis comes too late. GPA may look like a sinus infection or other symptoms that could be attributed to allergies. It may present as kidney disease or gum pain. The symptoms are wide and varied and often, patients are their own best advocates to keep digging for an answer.

About Watch 4 Wegeners

Our Story

Our daughter, Sarah River, was 20 yeas old and in Pharmacy School when she died suddenly and unexpectedly from a rare autoimmune disease called Wegener's Disease or, Granulomatosis with Polyangiitis (GPA). She was not diagnosed until after she died. No one knew she had this disease. She had been complaining of worsening allergies since the spring and was evaluated by an ENT and an allergist while home from college. We had a plan in place to deal with her "allergies." She took medicines and used a special device to force medicine up her nose. She used an air purifier and special bedding. She went to student health when her symptoms did not get better and was told twice that she had a sinus infection. She developed gum pain and saw a dentist. When we took her to the hospital she reported significant nose pain and the cartilage of her nose had changed. These are all signs of Wegener's Disease, but she was treated with antibiotics. A bronchoscopy was performed which caused her lung to collapse and caused blood clots. She died in the night from a blood clot that went to her heart. It was the next morning that we were told she had this rare disease. She did not have to die. If one provider had pieced her symptoms together and ordered one certain blood test, she would probably be alive today. Knowing about Wegener's Disease saves lives.