Under the recent “Big Dream” campaign, the Vasculitis Foundation asked me what my dream was for the Vasculitis Community.
Part of my response included the idea that it would be great to see all doctors understand and treat vasculitis with the same respect and attentiveness as they do for other serious and life-threatening diseases.
This feature highlights a great example of a proactive team of doctors’ approach to identify and care for a young adult with vasculitis.
I had the pleasure of meeting Lauren Becchetti, who received a diagnosis of Takayasu arteritis (TAK) in November 2014. Lauren’s initial path to diagnosis mirrors many vasculitis patients, when she began experiencing a rash of scattered symptoms throughout 2013 and 2014.
After experiencing extreme fatigue, ocular migraines, and throat pain, among other symptoms, her local doctor made the crucial diagnosis. Having treated patients with Takayasu’s, Roger Diegel, MD, a rheumatologist based in Kalispell, Montana, was aware of the initial symptoms.
“At first, you don’t realize how lucky or important it is to have an early diagnosis,” Lauren says. “It was a huge blessing in disguise.”
Like many in the vasculitis community, Lauren’s journey towards remission is not straight-forward.
After getting settled on prednisone and Imuran as a regimen for Takayasu arteritis, Lauren decided to move back to her home state of Minnesota in February 2016 to take a job at the Center for Diagnostic Imaging. While the physical move was relatively simple, the difficult part was the challenge of finding a new healthcare team, especially considering the challenges that come with having a rare disease.
An introduction to a pair of doctors with ties to Mayo Clinic was a lucky one for Lauren. The two doctors, Peter Kent, MD and Kenneth Warrington, MD, routinely communicated back and forth to verify she was getting the right care.
Ultimately, Lauren’s experienced team of doctors came through in a big way this summer, when she underwent a difficult bypass surgery that lasted nearly 12 hours.
While recovery from the surgery was tough and required her to be off work for over a month, Lauren is now doing well. She says her biggest hope is that improved technology will make diagnosis and treatments much easier going forward.
“It’s extremely important to make doctors aware, and get them the education they need on these diseases.” That is certainly a hope and a dream the vasculitis community can all get behind.
Source: https://rarediseases.info.nih.gov/diseases/7730/%20takayasu-arteritis
