NEW CANAAN — For much of her life, Colleen Hann had experienced odd medical issues.
In one year she had eight root canals. Twice in her 20s, she was gravely ill with pneumonia. And as a kid, she frequently broke bones, had tremors and had memory trouble.
The longtime New Canaan resident always had an idea something larger was wrong, but because of the elusive nature of lupus — the disease she would come to be diagnosed with — was never given a firm diagnosis.
That is, until seven years ago, when a doctor in Norwalk first uttered the word lupus to Hann. The diagnosis has enabled her to start combatting the chronic inflammatory disease and put her in touch with a network of similarly afflicted people through the Lupus Foundation of America.
Hann has recently taken on an ambassador role with the organization and will travel to communities around the state to educate people on what lupus is and how best to live with the disease. She will also be participating in the Walk to End Lupus, May 6 in New York City, and has started fundraising efforts.
To learn more or to donate, visit support.lupus.org/
Q: What are the symptoms of lupus that you experience?
A: I have about four of the criteria right now for lupus: The discoid rash, inflammation, joint pain, photosensitivity and I have elevated ANA [Antinuclear antibodies] levels.
They’re still diagnosing me. It takes a really long time to diagnose this disease, which is a little scary actually. I think I’ve had it since I was a child. And at that point, they really didn’t know what was going on. One doctor called me an “autoimmune phenomenon.”
Q: How has your involvement with the Lupus Foundation of America helped you to combat the disease?
A: I got the name of my current doctor at Columbia not through the Lupus Foundation directly, but through women who are patients and members of the foundation’s volunteer group that I work with. I do a lot of volunteer work for them and they’ve helped me a lot with support and networking and also just with their friendships. They mean a lot to me and the organization has grown tremendously over the last four years.
It’s endless as to how great this organization is and what they do for you and help you build your confidence in yourself.
Q: What is SLE lupus?
A: Systemic lupus erythematosus. It’s a chronic inflammatory disease, and it’s one of the most common forms of lupus. It affects everybody differently. Right now, I don’t look sick. But that’s not necessarily indicative of how I feel inside or how long it takes me to get ready in the morning.
I had people over for dinner last night and I did not finish the dishes because it takes me longer to do that. I just don’t have the strength to hold a heavy pot and clean it. My husband helps me a lot. It’s a lot of daily tasks that people do every day that have become a challenge for me. I’m working through it. I try to exercise; I walk every day. I used to be a very active person, so this is very hard for me. I used to dance in school, I skied, I ran track. I can walk now but I can’t run and I don’t ski anymore.
Q: When were you first diagnosed with SLE lupus?
A: About seven years ago now, but I feel like I’ve had it my whole life. It took such a long time because they didn’t have all the information they need to diagnose. It’s scary, it is a moving target.
At one time a doctor called me a hypochondriac and said ‘You’re not sick, you’re depressed, or you have fibromyalgia.’
Q: Prior to your diagnoses did you have any idea what lupus was?
A: No I didn’t know what it was. I thought maybe I had an autoimmune disease but then my numbers were inconsistent and my doctor told me I didn’t.
I was always getting chronic ear infections, chronic sinus infections. I got pneumonia really badly twice, both of which were, I think, induced by stress because I got it in college and then again when I was planning my wedding. It’s not normal for someone my age to get those kind of health issues. I also had a lot of dental issues. I had eight root canals in one year.
They just kept testing me and finding different results. And finally, when I went to the rheumatologist in Norwalk, he told me lupus is what fits best for you.
Q: Was it a relief to be diagnosed?
A: Very much so. Some people go into denial, but after having been called an autoimmune phenomenon I was just happy to have a name on it. Knowing what you have makes it a lot easier to manage your life and the stress levels that come with it. I was relieved. I go through my phases, sometimes I get a little down about it. I wouldn’t say I get depressed, but I do get down sometimes because there are times when I don’t feel well and I want to do something. I want to go out with my friends or go to the city and go to a lupus function and I just can’t do it.
We had over 6,000 walkers last year at the walk, and this is our 10th anniversary so it’s going to be a special day.
Q: Is there any cure for lupus?
A: There really is no cure, to my knowledge. It’s a cruel mystery, and one they haven’t figured out how to solve. But I really feel like with the research that the organization is doing that they will find a cure very soon.
Q: Despite there being no cure, do you feel optimistic?
A: I feel very well right now. A couple years ago I didn’t feel too great. So I’m very optimistic. The amount of research that’s out there is really significant. We’re not as far along as we are with cancer. But I think they have made significant progress. I’m extremely hopeful.
And I’m able to work full time. I’m able to go and do most of the stuff I need to do. I did miss stuff when I wasn’t feeling well, but a lot of that has changed through positivity and having the “I-think-I-can” attitude. If you believe in yourself you can do more.