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New director of Lupus Alliance of Upstate New York aims to boost awareness of the disease

Most folks know that Niagara Falls was bathed in purple in recent weeks to mark the passing of pop superstar Prince and the 90th birthday of Queen Elizabeth of Great Britain. The reason for the purple glow on the falls, the Buffalo Electric Building and the steel bones of the Peace Bridge this week was not nearly as familiar: May is Lupus Awareness Month.

Judith Christian aims to change that unfamiliarity.

The new executive director of the Lupus Alliance of Upstate New York has a hard act to follow, and not only because as the point person for the alliance, she is charged with boosting awareness about lupus across 33 counties in the Buffalo, Rochester, Syracuse, Albany and North Country regions. She also is following in the footsteps of Honi Kurzeja, who has the autoimmune disease and retired earlier this year after 37 years at the helm.

“She’s a hard act to follow, but you don’t step into this role without getting a lot of hand-holding from the former ED,” said Christian, 61, who does not have the condition but comes armed with a rich background in the nonprofit world.

“I worried about being able to speak with authenticity because I don’t have lupus,” Christian said. “But I wasn’t a homeless person when I ran St. Susan’s Center in Jamestown. I wasn’t a chronically ill child when I developed programs for Starlight Children’s Foundation. And I certainly wasn’t a soldier when I ran the Combined Federal Campaign for the National Capital Area for all of the government agencies in Washington, D.C. What I know I can do is listen to someone’s story and understand what I can do to help their story make a difference for themselves and others.”

One way the alliance will raise awareness is the Shine the Light on Lupus Brewery Challenge from 2 to 6 p.m. Saturday at 12 Gates Brewing Co., 80 Earhart Drive, Amherst; 5 to 9 p.m. Friday at Resurgence Brewing Co., 1250 Niagara St.; and 2 to 6 p.m. May 28 at Flying Bison Brewing Co., 840 Seneca St. Suggested donation is $20 and the event includes beer specials, food deals and prizes.

Lupus is a chronic, sometimes serious autoimmune disease that can cause inflammation in any organ in the body. It can be treated but not yet cured. There are 1.5 to 2 million people in the United States who suffer with it – more than cerebral palsy, multiple sclerosis, sickle-cell anemia and cystic fibrosis combined.

Christian is a West Side native who lives in the Elmwood Village and has two adult children, Christopher Burnett and Katelynn Christian. She holds a bachelor’s degree in marketing and communication from Medaille College.

Q. What are lupus symptoms?

Some people will show symptoms during college and child-bearing age, then they disappear. Some will get progressively worse. Lupus is known as the “Great Imitator” because so many of the symptoms mimic other diseases. So lupus isn’t the thing that comes in mind when you go to a doctor. If someone goes in and says, “I’ve got real painful joints,” the doctor says, “arthritis.” It could be either. One of the real prevalent symptoms is debilitating fatigue. Sometimes, you can’t even move. You might wake up and an arm or a leg feels paralyzed. You might temporarily lose your vision in an eye. It can affect your kidneys, your liver. It can eat the linings of your lungs, the heart. It can attack your brain, your joints, your skin. So if you have all of these and they don’t all present at once – and they present in different ways for different people – lupus isn’t the thing you think of. There is a test for lupus. For lupus patients, it’s 99.9 percent right, but a doctor has to give you the test. The downside is there is a 30 percent positive reading for people who don’t have the disease. The average lupus patient waits four or five years before they’re diagnosed. Some wait decades. If a disease is not easy to diagnose, it’s also not easy to raise awareness. People want to hide it. They don’t want to share their story. So one of the goals I have – second only to being able to provide our support group and new patient information across 33 counties equally, to anyone who needs it – is to encourage people with lupus, or their caregivers, to share what’s working for them. What makes it easier for them? How do they surround themselves with things that make them feel good? Continue to pursue their dreams? Anyone can talk about symptoms, but how do you live beyond lupus?

Q. What causes lupus?

Genetically, some people will have lupus in their family. A small percentage may carry that forward. Researchers also are finding that sometimes MS in your ancestry may cause lupus. They’re not sure what the connection is. Ninety percent of the patients who present with lupus are women between 15 and 45, but it can affect all ages, including men and boys and babies. Lupus is two to three times more prevalent in African-Americans, Native Americans, Asians, Latinos.

Q. How is it treated?

There’s only one new drug introduced during the last 50 years to treat lupus. It’s recent. Benlysta is a new biologic drug that is given by infusion once monthly. It allows patients to reduce their use of steroids. It is very expensive, as so many drugs are. Insurance makes the drug much more accessible. If your symptoms are different, you’re treatments are different. People have to be very flexible because it’s very, very complicated. That’s one of the reasons research is important and that the alliance gives to research.

Q. How many people have the condition in your service territory and how many families are effected?

We know there are about 105,000 people with lupus in New York State. We’re working on finding those numbers. We cover a lot of territory, so we have to make technology work for us.

Q. What is the alliance’s mission?

To provide support and education to lupus patients and caregivers, to raise funds for research, and raise awareness about lupus among the general population and medical professionals. For more information, visit lupusupstateny.org or call (800) 300-4198.

Q. What’s the staff like?

You just met us. It’s me and Patricia Halko, our volunteer and walk coordinator. I’d be lost without her. We have very well-developed boots on the ground in Albany and the Syracuse areas, and we have a lot of volunteers here and some real key board members.

Q. Any other goals?

We’re just taking over the Genesee Valley region, so making our presence known there, letting them know they haven’t been abandoned. Our job is to provide service, program information and support before we ever look to the community to give us a dollar. We will have in the next fiscal year, July 1 to June 30, a lupus symposium in every region. It will be with rheumatologists, who often become the primary caregivers for a person with lupus, other relative physicians, as well as somebody who can help anyone improve quality of life. It might be a nutritionist or any number of things. They will also include a health fair. The goal will be to entertain, educate and engage.

Q. Do you have any personal connection with lupus? Do you know somebody who has it?

I know a lot of people who have it now that I’m here. Here’s what’s interesting – I’ve known people for decades who have lupus but I didn’t know they had it until I got this job and they felt comfortable telling me. That’s how devastating it can be to open up about this. If you only have the chronic fatigue, people think you’re lazy. If you have chronic fatigue and you’re joints ache, and it comes and goes, people think you’re a hypochondriac. When you’re going to the doctor for four years and can’t be diagnosed, people think you’re a hypochondriac. It isn’t fair, and I want very, very much to raise awareness about this.

Medical science is not black and white. It’s constantly evolving. It’s becoming more accurate. We’re becoming more informed. People think nothing about technology changing every six months. Don’t we realize the same thing is happening in our medical professions?

You start wondering yourself. Am I really lazy? Am I sick? Is this psychosomatic?

Even though someone may have several symptoms, you can’t always tell. Physically, it doesn’t always manifest itself in a way someone would recognize. It’s internal. How would you know if you’re own immune system is attacking your heart lining. How would you know if your immune system is attacking any other part of your body? You don’t know this unless you’re being tested. Unless you have some kind of symptom that manifests itself and takes you to a physician, and the physician recognizes it and gives you the proper testing. And lupus isn’t what people think of right away. They’ll think heart, they’ll think pulmonary. They’ll think kidneys. They won’t think lupus.

Q. Can you talk about the support groups and Telephone Buddy program?

The Telephone Buddy program is new. I’ve pulled maps of the counties of the state and we’re assigning people where we have three walks in upstate New York – Buffalo, Syracuse and Albany – that raise quite a bit of money. Where is the money coming from? Our membership. Where are our members? Where do we have our volunteers? Who comes to our support group meetings? I want to know county by county across the state. I received a phone call about a month ago, right after I started, from a lady in Plattsburgh, 10 miles south of the Canadian border, who just got diagnosed with lupus and didn’t know anything about it. We sent all sorts of literature to her with a note that said, “We are gathering more information for you.”

Physicians treat lupus and health care facilities have lupus programs. We would send that information but we had nothing for Plattsburgh, so one of our volunteers pulled all of the information we had for the county, called all the physicians in the area to see if they were still taking patients and called the woman back. She was over-the-moon happy. We gave her all kinds of information she needed. She didn’t have to do the research. We did it here.

Now what we’ve done, thanks to one of our board members, we’ve gotten the national director of rheumatology and affiliated facilities and it breaks it down by area, so we now know who to call in the area.

The lady in Plattsburgh isn’t going to drive three hours to go to a support group meeting. Even if there was one close by, there’s no guarantee she can get into a car and drive there. That’s going to be true of some patients across upstate New York. So were looking at virtual support group meetings. But on the flip side, some people aren’t comfortable with computers, and not all laptops or desktops have video capability for support meetings. So we’ll get someone who has similar symptoms of lupus who will call the person and spend time on the phone with them.

Q. Are you in need of volunteers for your speaker’s bureau or other duties?

We’re desperate for more volunteers. They can go through training and be a Telephone Buddy. They can help us stuff envelopes, in planning and executing fundraising events. They can help us with advocacy, volunteer for our walks. They can write grant applications. (Those interested can call the toll-free number.

Q. Might the American diet be a contributing cause to some of these autoimmune diseases?

I would agree with that. My daughter has been vegetarian since she was 14 and I became a vegetarian, too, because it was just easier than making two meals. I felt 15 years younger when I became vegetarian. ... That’s why I want people who come to our symposiums to hear that there are things that you can do. You don’t have to wait for a diagnosis. It’s not about the medicine. It’s about what you do for yourself.

email: refresh@buffnews.com

Twitter: @BNrefresh, @ScottBScanlon