Often, one of the greatest challenges a patient with vasculitis faces is receiving a definitive diagnosis. Patients often spend months or even years seeking a diagnosis or worse, living with a misdiagnosis and ineffective treatment.
The Vasculitis Foundation also recognizes that there are many health care professionals who have MADE the diagnosis of vasculitis, and we want to honor them for their efforts to care for our patients.
The idea for the award originated with VF Board Member, Karen Hirsch, whose son, Michael, was diagnosed with GPA/Wegener’s in 2011 by Dr. Juanita Mora, an allergist/immunologist at the Chicago Allergy Center. “I followed my gut and ordered further testing,” says Dr. Mora. “The labs and CT Chest confirmed the diagnosis of GPA/Wegener’s. Michael received prompt treatment, and the early diagnosis was critical and lifesaving in the preservation of his healthy organs and getting him in remission.”
It was a combination of frustration at pediatric experts missing her son’s disease, and the desire to recognize and reward those doctors who do make an early diagnosis of vasculitis, which led Karen to propose the VF V-RED Award.
Hirsh developed the V-RED Award to recognize and reward those doctors who made an early diagnosis of vasculitis in a patient. Each year the Vasculitis Foundation solicits patients in the vasculitis community to nominate a doctor who made an early call on their diagnosis.
This year the 2016 V-Red Award was presented to three special physicians.
Dr. Seth Sullivan, Clinical Educator/Hospitalist at Norwalk Hospital, in Norwalk, Connecticut
Dr. Seth has been awarded the Vasculitis Foundation’s 2016 Recognizing Excellence in Diagnostics (V-RED) Award.
David Tait, a resident of New Canaan, Connecticut, nominated Dr. Sullivan for the VF’s 2016 V-RED Award believing that it was Dr. Sullivan’s early diagnosis of vasculitis that gave him a more positive health outcome. In 2014, after suffering a heart attack, Tait was taken to the Norwalk Hospital Emergency Department where he was placed under the care of Sullivan.
Dr. Sullivan said that as a hospitalist he reviews each patient’s prior medical history and test results. He becomes a clinical data detective looking at all of the patient’s medical records for diagnostic red flags.
In David’s case, it was an unusually high eosinophil count that captured Sullivan’s attention. Based on his findings, Sullivan was able to diagnose Tait with eosinophilic granulomatosis with polyangiitis (EGPA /Churg-Strauss Syndrome), a rare autoimmune systemic vasculitis.
“It took me some time to gather and review all of David’s records, and we were stymied for a couple of days when some of his workups came back negative,” said Dr. Sullivan. “However, I nonetheless suspected Churg-Strauss, and I was able to uncover a series of case reports of patients with Churg-Strauss, which fit David’s clinical profile.”
It was Sullivan’s early diagnosis of vasculitis that prevented the disease from progressing and causing more serious organ damage. Tait was immediately treated with prednisone and Cytoxan, which are standard therapies for vasculitis patients.
“The award is of course very meaningful to me personally, and I appreciate the recognition from the Vasculitis Foundation and all of the great work it does to raise awareness of these treatable but difficult-to-diagnose diseases,” says Dr. Sullivan. “I hope that this award can serve to prompt clinicians to keep vasculitis in mind as they go about their busy day-to-day activities so that we can intervene appropriately for our patients.”
Kate Kinney, ACNP, Monroe Clinic Hospital, Monroe, Wisconsin
Kinney was nominated for the award by her patient, Michael Gunderson, a resident of Davis, Illinois. Gunderson was suffering from chronic symptoms that included severe sinus infections, joint swelling, and fatigue. When the symptoms grew worse and didn’t respond to multiple courses of antibiotics, Gunderson went to Kinney who works as a hospitalist at the Monroe Clinic.
Kinney and her medical team analyzed Gunderson’s medical history to search out a possible underlying cause for the chronic symptoms. She got a clue from Gunderson, who told her that an ENT once suggested he might have vasculitis, a rare autoimmune condition whose symptoms can mimic other common illnesses. However, numerous specialists who saw Gunderson didn’t suspect anything unusual.
What Kinney ultimately discovered from a lung biopsy was that Gunderson’s condition was anything but ordinary. She confirmed that Gunderson did have a rare, and serious autoimmune condition called Granulomatosis with polyangiitis (GPA/Wegener’s) vasculitis. The disease affects the upper and lower respiratory system and frequently involves the kidneys, lungs, eyes, ears, throat, skin and other body organs.
Once Kinney made the diagnosis, doctors were able to begin the standard therapies to treat his vasculitis. Gunderson credits Kinney’s tenacity and team-centered approach to her work as a major factor for catching the rare disease before it could cause further damage to his health.
“We were grateful that someone finally made a diagnosis, and that I was going to start an aggressive treatment plan, and maybe, just maybe, get me well again,” says Gunderson.
“Without the GPA diagnosis by Kate, I think I can safely say I wouldn’t be here.”
Kinney was presented the V-RED Award during a recognition ceremony at the Monroe Clinic earlier this year.
Dr. Jeffrey Raines, Obstetric/Gynecology Department of Fairview Medical Group Fairview Medical Center, Maple Grove, Minnesota
It is not unusual that a medical specialist is one of the first doctors to see a patient suffering the early onset of vasculitis symptoms.
This was the case for Jodi Resnac, who was under the care of Dr. Jeffrey Raines, a general obstetrician/gynecologist and supervisor for the Obstetric/Gynecology Department of Fairview Medical Group in Kingsman Arizona.
Dr. Raines explains that in his role as Jodi’s obstetrician he was responsible for her care and the eventual delivery of her baby. During a routine testing of her kidney function, Dr. Raines caught a red flag. Jodi was showing protein excretion in her urine (proteinuria) which isn’t necessarily unusual during pregnancy. However, in Jodi’s case, it was happening much earlier than normal.
Dr. Raines sensed that something else was going on. “She was also complaining of problems with her nose and a loss of the sense of smell. That is a very unusual complaint from a patient,” explains Dr. Raines. “I remembered from my training there was a particular named disease, Wegener’s granulomatosis, where you see nasal lesions in addition to a glomerulonephritis (inflammation of the kidney) that can cause proteinuria. There are several more common blood tests that we can do to evaluate for a rheumatologic condition and when these were positive, we then referred Jodi to Rheumatology, and also involved Maternal Fetal Medicine once the diagnosis was confirmed.”
Jodi remembers the appointment when she got the diagnosis started out normally, but turned serious as Dr. Raines shared his concern over her tests. “He sat me down and told me he had run some tests because he had seen an abnormal amount of protein spilling into my urine,” Jodi recalled. “I also tested positive for the ANCA test. He gently said he was suspicious that I had a treatable auto immune disease called Wegener’s granulomatosis.
Jodi immediately contacted her mother, Jan Petersen, with the news. It was particularly devastating to Jan because she was familiar with the disease. “When Jodi told me the news, I knew exactly what she was talking about because my sister had had a series of five collegian diseases from 1975 until her death in 1981. Wegener’s being one of them. When Jodi told me the name of the disease, I just put my head on my desk and tried not to cry,” Jan said.
Jodi began treatment for vasculitis with prednisone and methotrexate. Since her diagnosis in 2003, Jodi’s team of doctors grew as she dealt with complications from the vasculitis. Today, her creatine level is normal, and she hasn’t experienced any flares.
Jan learned about the V-RED Award and nominated Dr. Raines because she believes it was an early diagnosis that made all the difference for Jodi. “I nominated Dr. Raines for the V-Red Award because that is exactly what he did for her,” explained Jan. “He diagnosed Jodi early on and enabled her to get excellent medical care following the birth of our grandson.”