May 082009

I realize this probably isn’t circled on your calendars, but May 3-9 marks Vasculitis Awareness Week 2009. Vasculitis is a somewhat rare disease, and because symptoms vary it can be difficult for doctors to diagnose. Some vasculitis patients suffer symptoms for years before receiving effective diagnosis and treatment, so it’s useful for people to know these diseases are out there.

I was almost killed by vasculitis in my mid-20’s, and share my story here as a small way to raise awareness.

What is Vasculitis?

Vasculitis is an inflammation of the blood vessels. Because blood vessels are so central to the body’s functioning, this inflammation can lead to a variety of symptoms: the most common are low-grade fever, fatigue, weight loss (loss of appetite), skin ulcers or rashes, and pain in the muscles, joints, and/or nerves. The causes aren’t well understood, but many vasculitis diseases (vasculitides) seem to be autoimmune in nature (caused by the immune system’s mistaken attack on the body itself, as with the better-known Lupus, MS, and Rheumatoid Arthritis). Treatment generally involves a combination of corticosteroids to combat inflammation and chemotherapy to weaken the immune system.

My Story

My own form of vasculitis is Wegener’s Granulomatosis, an autoimmune disease that most often affects the respiratory system and kidneys.

According to the Vasculitis Foundation, researchers estimate that 2 people out of every million are diagnosed with Wegner’s Granulomatosis each year.My “2 in a million” moment came in 1996. I was just back from a few years abroad and (much to my parents’ relief) ready to start summer classes for law school, but I never felt right that summer. I had a temperature around 99 degrees that never seemed to go away, my nose ran constantly, and I was waking up every morning with bloody phlegm in the back of my throat. Then came nosebleeds, odd pains in my lungs, a wheezing sound when I breathed, and overall a feeling of being really unwell. Toward the end, I started coughing up pieces of lung. That’s when I really grew concerned.

I was a frequent visitor at Student Health that summer, dragging myself in every time a new symptom appeared. But for the most part, the doctors there didn’t see anything too unusual. They said it was a sinus infection, then “not a sinus infection, maybe allergies, probably nothing” (when I pressed my concerns, the doctor said 99 was “barely a fever,” nosebleeds “sometimes just happen,” etc), then “maybe pneumonia.” Meanwhile, I grew worse each week. By the time Finals rolled around, another Student Health resident finally referred me to a lung specialist. The specialist couldn’t see me for a few days, and the doctor called me every day in the meantime to check in. Still unclear on the seriousness of my situation, I told my mother about “the nice doctor who’s calling me at home to see how I’m doing.” My mother replied, “he’s calling you at home to see if you’re still alive.”

Sure enough, the specialist checked me into the hospital immediately. By that point, I was so weak I routinely stopped breathing for a few seconds at a time. My airway was swollen to only a few millimeters wide (the source of that wheezing I’d been hearing for weeks). A definitive diagnosis requires biopsy, so they put me under to take a sinus biopsy — in the process, I suffered a pulmonary hemorrhage and wound up on life support. But as soon as they confirmed the vasculitis and started me on steroids and chemo, the inflammation began to subside and everything took a turn for the better. I was in the hospital for a week, then took a year off to take the drugs and rebuild my strength.  As with cancer, there’s never a guarantee that the disease won’t reappear. But I’ve been in remission for over a decade now, and there’s also a chance it may not reappear.

Why Should You Know About Vasculitis and Other Autoimmune Disease?

Autoimmune diseases aren’t common, and hopefully you and your loved ones will never face one. But because their symptoms can be very general (“I’m exhausted,” “I don’t feel well,” “I have a low-grade fever”), doctors can’t always diagnose the problem quickly. As a health-care consumer, here are 2 useful things to remember:

(1)  If you have widespread or long-lasting undiagnosed health problems, especially if they include a prolonged low-grade fever, consider asking your doctor about autoimmune diseases.

(2) There are a few simple blood tests that measure inflammation in the body. (I’m most familiar with the “Sed Rate,” which has an added advantage of being super-cheap.) If you have extended symptoms that your doctor can’t figure out, consider asking about these tests. They are non-specific because inflammation can have many causes. But a particularly high result could be a red flag that further testing is warranted.

(3) And if you or someone you know is ever diagnosed with a vasculitis or other autoimmune disease, remember that the body is amazingly resilient and can handle a lot of attack.  There are many drug treatments available these days, and hopefully remission will be possible.  It’s never the end of the world!

  5 Responses to “Vasculitis Awareness Week: My Story”

  1. Thank you so much for sharing your story. I admit I’ve been curious. Autoimmune diseases run in my family, I’m a Type I Diabetic, my mom has a thyroid condition as well as fibromyalgia and my sister has vitaligo. I think it is very important to educate ppl on different autoimmune diseases considering my mother went through years of different docs who couldn’t figure out what was wrong with her and thought she was crazy.I’m so glad that Dr diagnosed you in time :)

  2. [...] I grew up a perfectionist. And then, in my 20s, I got very, very sick. [...]

  3. Thank you for sharing your story! I have been diagnosed with urticarial Vasculitis in October 2012. They don’t know what caused it and think it’s my body attacking itself. My IgE was very high, ESR was 20. Saw a rheumy now in Feb, but she saw nothing systemicly wrong at the moment. She did say i have an umbilical hernia and TMJ that needs to be fixed and i have Livido Reticularis on my legs and arms.

    The last two weeks i have sinus problems that just won’t go away! I have used nose sprays that was given to me and used meds for sinus. Today my neck in front itches alot. Wheezy breathing. Coughing up phlem . I wish i could get to the bottom of it all.
    I do hope you are doing better.

    Kind regards


    • So kind of you to comment, Vicki! Sorry to hear of your own health troubles. Autoimmune disorders can be so frustrating, in so many ways. I think it’s clear doctors don’t really understand the full effects on the body. I suffer from all kinds of hard-to-pin-down chronic conditions now that I’m convinced are due to after-effects of some combination of autoimmune damage or chemo/steroids side effects. But the good news is, my original autoimmune disorder never came back! So sometimes they really can just fix it and have it go away…. Good luck to you, in terms of getting things figured out and getting yourself back to wellness.

  4. I’m lying here in bed reading commits in complete and total discomfort my story begins when i first got a large deep wound on the top of my left foot when i was 13 it seemed to appear from no were it was very pain-full so my folks took me to the navy hosp in long beach ca and they said it was a insect bite gone infected but i was certain i was not bitten as month and a half later the same Dr’s were discussing whether or not to amputate my left foot that was nasty smelling and rotting my mom said no took me home and soaked my foot in warm salt water what seemed forever and i keep my foot only to experience that same punishing cycle over and over.years later it thought it would go a little higher so it rotted my shins now at 49 years of age praying all the way im a little tired of this im losing this battle, one thing i learned in my journy is you are alone only u can take the pain take it take take it. good night.

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