Vasculitis? What is it and why should you care? Indeed vasculitis is a rare disorder, one you may have never heard of and one that you likely will never personally develop. But the disorder includes nearly twenty different rare autoimmune diseases and at some point, you or someone you know or love may be faced with it. Awareness may help you recognize its symptoms, address them and perhaps save a life.

Vasculitis is a general term for inflammation of the blood vessels. Inflammation that causes narrowing, weakening and scarring, and can restrict blood flow and possibly cause damage to vital organs and tissue. The diseases in the vasculitis family are counted among many other autoimmune illnesses where an overactive immune system mistakenly attacks it’s own healthy cells. Some of them, without treatment, are life threatening.

Up until the seventies, several forms of vasculitis were almost always fatal. That was until a young doctor began working on it with his mentor; examining it in their work at the National Institutes of Health, Dr. Anthony Fauci, (yes, that Dr. Fauci), and Sheldon Wolff were asked to also consult on cancer treatment for patients at the National Cancer Institute. The powerful forms of chemotherapy that were being used had the side effect of suppressing the immune system. Fauci realized that perhaps, vasculitis patients would also benefit from the same drugs at a lower dose. By utilizing the same chemotherapy, they were able to put patients in remission with these life saving measures.

The more severe forms of vasculitis usually require lifelong medical care, but today, patients can live long and relatively normal lives. Some forms are mild and may improve on their own. The diseases are categorized by the size and location of the vessels that they affect. Many share similar symptoms and treatments, but each is distinct and needs to be treated specifically. Among these diseases are:  Goodpasture’s Syndrome, Behcet’s Disease, Kawasaki Disease, Polyarteritis Nodosa, Granulomatosis with Polyangiitis, Rheumatoid Vasculitis, and Takayasu’s Arteritis.

The different symptoms of the different forms of vasculitis can be mistaken for other illnesses, some appearing very benign, but could signal serious illness: chronic congestion and/or sinus and ear issues, headaches, rashes, eye pain and redness. Other symptoms such as fever, muscle or joint pain, excessive fatigue or weakness, lack of appetite or weight loss, abdominal pain, shortness of breath, a lingering cough or coughing up blood, abdominal pain, neuropathy, and bloody or dark colored urine can be alarming. Some experience mild symptoms of the same illness that may strike another person aggressively.

Vasculitis can affect anyone at any age, and usually affects women and men equally. While some forms may be more common among certain age or ethnic groups, none are exclusive to any one group.

Diagnosing these diseases can be challenging, and so finding the right doctor is paramount to finding the right treatment. After a full exam, and depending on symptoms, doctors may order a variety of lab work or imaging, biopsies or lung function tests in order to accurately diagnose and confirm their diagnosis before beginning treatment. Once diagnosed, a team approach with several specialists is typically recommended depending on the organs involved.

Vasculitis is rare, but there’s a good likelihood you’ll know someone living with it. Awareness leads to knowledge and that’s always a good thing.

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