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Coping with Vasculitis and Contributing to Research

Meteorologist Ida Hakkarinen, shown with a weather satellite being prepared for launch, has a form of vasculitis. She takes part in NIH-supported clinical research.
Photo: Dusty Volkel/©Lockheed Martin

A Personal Journey for Ida Hakkarinen

For two-and-a-half years—May 2009 to November 2011—Ida Hakkarinen felt like a walking catalog of disease symptoms: reflux, joint aches, bronchitis, night sweats, elevated body temperature, extreme fatigue, sinus congestion, trouble breathing, wheezing, chronic cough. Some came and went; some came and stayed.

“Now that I look back at those episodes,” Hakkarinen says, “I wonder if they were signs of GPA waiting to break forth.”

The GPA she mentions is granulomatosis with polyangiitis (GPA, formerly Wegener’s granulomatosis), one of more than 30 rare diseases that fall under the umbrella of vasculitis—a condition that involves inflammation in the blood vessels.

“I did not know what vasculitis was, prior to my diagnosis,” says Hakkarinen, a meteorologist with the National Oceanic and Atmospheric Administration. After undergoing surgery at MedStar Georgetown University Hospital in December 2011 to widen her airway, which had narrowed due to inflammation, Ida was referred by her surgeon to Dr. Thomas Cupps, chief of the division of rheumatology, immunology, and allergy at Georgetown University Medical School. He diagnosed her in early 2012 with GPA and became her treating physician. Over the next two years, she was hospitalized twice for relapses.

NIH Clinical Trials

In 2014, Dr. Cupps, told her about a vasculitis research trial at the National Institutes of Health (NIH) by Dr. Peter Grayson, founder of the Vasculitis Translational Research Program in the NIH’s National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

“Having a rare disease, I wanted to contribute to the research being done in vasculitis through the use of my personal health data,” she says. “I also hoped that through a clinical trial, I could benefit from having a ‘second opinion’ from a medical professional researching the disease, which might help my treatment.

“I knew from my Internet searches about GPA that the research conducted by Drs. Sheldon Wolff and Anthony Fauci at the NIH from 1968-1971 was fundamental to the discovery of a treatment for the disease, leading to the use of cyclophosphamide in combination with prednisone for bringing GPA into remission. Through their clinical trials, GPA was transformed from a nearly uniformly fatal disease to a chronic one,” says Hakkarinen.

Hakkarinen was accepted as a participant in Dr. Grayson’s research at the NIH Clinical Center. She felt confident that Dr. Grayson and his colleagues would provide an additional medical opinion regarding her diagnosis and the current state of her disease, as well as recommendations for treatment.

Dr. Cupps suggested this study to Hakkarinen because, as he told her, one of the benefits of being in a research study is gaining information about the newest ideas in treatment options.

“In the beginning, I went to the NIH in Bethesda, Maryland, four times a year for routine lab work, including blood samples, totaling 18 vials each time, and a urine sample,” she says. “Beginning in 2016, my appointments changed to every six months. A variety of tests are performed on my blood. My understanding is that, while clinicians and researchers look at a variety of measurements to assess the state of a patient’s disease, there are no clear biomarkers identified at this time.

Find Out More

“That’s one goal of the study Dr. Grayson is performing,” she adds, “to gather a cohort of patients with vasculitis (both adult and pediatric) to evaluate the signs and symptoms, imaging findings, and blood and tissue biomarkers associated with pathogenesis and disease outcomes. Another goal is to identify, from this group, patients for possible entry into future protocols of treatment studies.

“After each of my research visits, Dr. Grayson provides input to Dr. Cupps regarding recommendations for my treatment. I appreciate having another set of data and the insight from a second medical team on the status of my disease and treatment options.

“The NIH patient data portal is being updated to enable results from NIH laboratory findings to be available electronically to a patient’s clinicians. This connectivity of electronic health records will be an important step in data sharing between the research physicians and the patient’s treatment physicians.

“As a patient with a rare disease that is often complex and not easily diagnosed in its beginning states,” she adds, “I feel a duty to help educate young medical professionals about granulomatosis with polyangiitis, and the importance of gathering accurate medical histories that include often subtle signs and symptoms that, when pieced together, outline a framework suggestive of a diagnosis of vasculitis.”

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Vasculitis / Coping with Vasculitis and Contributing to Research

Fall 2016 Issue: Volume 11 Number 3 Page 11