VF in the News

Grace’s Story

My name is Grace. “Wegener’s granulomatosis” (WG) the excited medical student exclaimed, you’re lucky to see a couple cases in your career and this is my first week. As a registered nurse of nearly 30 years, I never heard of WG and now was the patient being spoken about. My family and coworkers searched the internet for information while I struggled to cope with the symptoms and being on the receiving end of healthcare. I never dreamed this event would lead to the role I will now play in making a difference in the lives of those with WG and vasculitis.

My vague symptoms of sneezing and runny nose of a couple of months duration progressed suddenly to bloody noses, skin rash, migratory arthritis, blood in my urine and a temperature of 102.These symptoms, along with having a sister in law with Lupus, quickly brought the concept of an autoimmune disease to my mind. I truly do consider myself one of the lucky ones. Bonnie, the physician assistant at Internal Medicine Associates listened to my concerns of autoimmune disease and Dr. Pasquale B. Iaderosa, my physician who had actually cared for a WG patient in his residency, recognized the symptoms. I was hospitalized in acute renal failure. Lab work and a kidney biopsy confirmed the diagnosis of WG. I was started on a course of high dose IV steroids, Cytoxan and plasmapharesis for additional pulmonary symptoms which had developed. My creatinine rose from 1.3 to 5.0 within the week before starting to respond to the treatment course. The creatinine levels returned to the normal range within six weeks. I still wonder what my fate would have been had Dr. Iaderosa not recognized the symptoms of WG and initiated the referrals for early diagnosis and treatment.

Approximately a month after my diagnosis a distant relative sent a copy of the WG Association newsletter with details about the July, 2004 Cleveland Clinic Symposium. I quickly signed up eager to learn as much about WG as I could. The weekend was filled with the research into the causes, pathology and treatment of WG. Most importantly I met many individuals with WG carrying on a normal lifestyle. Armed with the symposium resources I sought out the additional care of Dr. W. J. McCune, rheumatologist, at the University of Michigan for further evaluation and management of my disease process which has progressed without incident to this point in time.

At the time of my diagnosis I was nearing the completion of courses to advance my nursing degree and used every opportunity to learn more about WG. My community based graduation project involved meeting with the current support group leader in the Detroit area to identify some of the outstanding needs of the group. We worked to advance the group to a chapter with a mission to reach out and support the needs of those in our community whose lives have been touched with WG. A survey was developed to identify the needs and interest of the local members. Goals were set to offer health education and promote awareness of WG in addition to offering support. Meeting attendance increased as did the group involvement and enthusiasm. Nine of our group members attended the 2006 Symposium in Baltimore, Maryland.

I am truly honored to serve as the WG representative for the Vasculitis Foundation Education and Awareness Council. I believe this is a great opportunity for me to give back to the organization, to share my personal and professional knowledge and experience. I believe improved awareness of vasculitis in the health care community will support earlier diagnosis, better management and outcomes for others. Increasing our members understanding of their disease, treatment and prevention of complications will improve their quality of life. I look forward to making a difference in the lives of those dealing with WG and vasculitis.

To read more stories, please visit the Vasculitis Stories landing page.