Self-Advocacy and Attitude: How Anna Survives (and Thrives) in Her Life with Granulomatosis (Pt. 1)

When Anna tells me about her diagnosis of Wegener’s granulomatosis just about thirty years ago, she shares that she does all that she can to not allow it to encompass her life:

I do not center that as my identity. This disease gets the attention that I want to give it, which is not a lot because, truthfully, that’s not how I want to spend my time.

Since her diagnosis, Anna has undergone two bouts of symptoms – both drastically different from the other – as well as chemotherapy and other treatments. Yet she has never let her condition get in the way of living her life as fully as possible. From traveling and completing triathlons to getting married and building new friendships, Anna reminds the world that a diagnosis is not a full view of who someone is – or what they can achieve.

In our interview, Anna and I discuss what Wegener’s granulomatosis (or GPA) is, how she managed with her condition (while finding the best doctors), the importance of self-advocacy, and her hopes to write a book to inform others!

What is Wegener’s Granulomatosis?

Wegener’s granulomatosis, or granulomatosis with polyangiitis (GPA), is a rare blood vessel disease which causes inflammation of small and medium-sized blood vessels throughout the body. In particular, this often affects blood vessels in the sinuses, nose, throat, lungs, and kidneys. As a result, blood does not flow properly and cells are unable to get needed oxygen. GPA is classified as an autoimmune disorder, in which the body’s immune system mistakenly attacks healthy tissue. However, genetics, as well as infectious and environmental factors, may also play a role. While GPA is most common in those between ages 40-60, it can affect people of all ages; Anna was only 20 years old when she received her diagnosis.

When symptoms manifest, they can include:

  • Nasal congestion with drainage and crust formation
  • Hematuria (blood in the urine)
  • Frequent nosebleeds
  • Joint pain
  • Skin rashes or abnormal bruising
  • Ear inflammation, pain, and hearing loss
  • Fatigue
  • Eye inflammation, pain, and redness
  • Shortness of breath
  • A cough which produces blood
  • Fever and night sweats
  • Fatigue
  • Numbness, particularly in the fingers, toes, or limbs
  • Organ failure (related to ongoing blood vessel inflammation)

Anna’s Story

In 1992, Anna was working at a co-op at Disney, enjoying the atmosphere and, of course, the sunshine. But behind-the-scenes, she was dealing with a number of health issues that had appeared, seemingly, out of nowhere. On March 8th, she noticed a rash developing on her legs. The rash came with another issue—severe leg pain that, from that day forth, often kept Anna from sleeping and made it painful to walk.

At first, Anna visited an urgent care center, where the doctors prescribed prednisone and promised that everything would clear up soon. The only problem? Relief didn’t come. Over a week later, Anna’s legs were still painful and blown up. And more concerningly, within weeks of this initial rash, she also found herself congested with bloody snot.

The urgent care doctor suggested that she find a dermatologist who could help. Anna shares:

The dermatologist took one look at me and, after hearing about my sinus issues and my other symptoms, pretty much immediately diagnosed me on the spot. There’s a lot of people who get Wegener’s and it simmers for years and years. I had the full-blown version. Doctors took pictures of my legs for medical journals. But at the time, there was not really any information available, and the internet wasn’t around yet for researching, so I didn’t realize how significant of an issue it was. I think I went to a library and printed out some pages on it. I didn’t understand what it meant to be really sick since I had always been healthy.

At the time, Anna was just twenty years old. Her doctor told her that she needed to leave Florida and go back to St. Louis to pursue treatment. So in May 1992, right after her 21st birthday, Anna went home. She attempted to find a doctor who would help with treatment, but found that many doctors didn’t know much about the condition. Even though she visited a doctor who said he might be able to treat her, he had to look up her condition, which gave her no confidence that he could help.

Back to School

Rather than stay in St. Louis, Anna decided to head back to school in Springfield; she figured that she could figure out her treatment plan once she got there. But as soon as she made it to Springfield, her symptoms once again intensified. The only difference was that in Springfield, she was able to find a rheumatologist to help her. She shares:

My rheumatologist and his office were like my little family and, at the time, they offered some of the best support I could find. I was on my own. A lot of my family and friends just didn’t get it.

During this time, Anna’s rheumatologist helped her begin treatment – but treatment was difficult, to say the least. In addition to getting a kidney biopsy, Anna underwent Cytoxan (chemotherapy) treatment. She says:

Cytoxan was brutal, especially in college. My hair fell out. I tried getting a wig, but that wasn’t for me, so I wore hats. I was trying to ignore what was going on and did everything that I could to not think about it too much. I was responsible with all the medical things I had to do, but outside of that I just stayed in a state of denial, and that really worked for me.

Anna was on Cytoxan for around six months before her symptoms calmed down, and then took meds until she graduated in 1994. At that point, she did her best to just move on. Anna traveled, learning different cultures and embracing new ways of life. She started in Switzerland in 1994, moving to Minnesota in the spring of 1995. By that fall, she was in London; 1996 first brought her Istanbul and Africa before she eventually settled in Ft. Lauderdale, Florida.

Join us in Part 2 and Part 3 to learn more about Anna’s Ironman experience, her 2nd GPA episode, finding love (and an advocate), advice, and the importance of self-advocacy. 

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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