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Put one foot in front of the other today on National Walking Day

You’ll want to bring your umbrella to work today – especially if you want to join thousands of others for National Walking Day – just in case it rains at lunchtime.

The Surgeon General will get in on the act, as you can read here. It’s part of a national effort to encourage people to get in their exercise in the easiest of ways.

“What we love about walking is it’s the most popular physical activity, and it’s the least expensive,” said Philip L. Haberstro, executive director of the Wellness Institute of Greater Buffalo.

Haberstro will be featured in Saturday’s “What are you Eating” segment in WNY Refresh and there will be a related blog on group walking opportunities in the coming weeks.

But there’s no reason to wait until then.

No matter how soggy it gets during lunch hour today, Haberstro will lead a 30-minute walk downtown, starting just after noon at the Rath Building, 95 Franklin St.

– Scott Scanlon

Undiagnosed Children's Awareness Day focused on genetics, rare diseases

I have a friend whose son has profound disabilities, and suffers from seizures and a host of other problems. For years, doctors have treated his symptoms but struggled to get to the bottom of his heartbreaking condition.

Odds are not high that they will.

Dr. Jimmy Lin doesn’t like those odds – or the odds of an estimated 300 million others who suffer from rare diseases around the world.

That’s why he created the Rare Genomics Institute.

I share the rest of the information below with words of caution: I know very little about this institute. I’ve downloaded a free e-book and will try to learn more, but I wanted to put its efforts on the radar for parents and families who may have a loved one with a rare disease.

The institute’s website lists several doctors and researchers bent on helping you get potential help – and they believe it will come in the form of genetic sequencing that one day will revolutionize health care.

That day has yet to come.

The challenge, says a key Roswell Park Cancer Institute genetic researcher, is that he and his colleagues don’t know if major advances are months, years or decades away.

Dr. Carl Morrison, executive director of the Center for Personalized Medicine at Roswell, was among panelists last month at a health journalists conference in Denver, during a talk entitled, “Getting Personal: The medical and ethical challenges of using genetic information.” Morrison and other panelists talked about the early work cancer and other researchers are doing to single out gene variances that can lead to disease in efforts to more efficiently target treatment. The work is difficult, lacks the specificity many scientists would like to see and remains costly, Morrison said, and health insurers and government health payers still haven’t come aboard to help cover the cost of this diagnostic tool.

As a result, “This is still a rich man’s game,” the Buffalo cancer specialist said.

But Friday was Undiagnosed Children’s Awareness Day, for what that might be worth, and the institute looks to link those with rare diseases with scientists, at the very least, interested in looking for solutions.

For Refresh readers who fit that bill, I wanted you to have this potential resource in your hands.

- Scott Scanlon

One teacher's health regimen: Swimming, personal training, vegetable stew

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University at Buffalo associate French professor Maureen Jameson swims Tuesday, Thursday and Saturday mornings in the Alumni Arena pool. (Mark Mulville/Buffalo News)


By Scott Scanlon – Refresh Editor

Maureen Jameson has the kind of varied interests you might expect from an associate professor of French at the University of Buffalo.

She currently is studying the ethical implications in the works of French authors who celebrate smoking “as an assertion of liberty and the right to seek pleasure for its own sake.”

When she turned 60 last year, she decided to continue to age aggressively, seeking help from a personal trainer and adding healthy diversity to her diet. (See her recipe for spicy vegetable stew at the bottom of this blog post.)

And swimming continues to be among her passions.

“I am hanging on by my fingernails in roughly the middle of the pack of our whole team,” Jameson said of her participation in Nickel City Splash, a 17-year-old masters swim team that gathers in the UB Alumni Arena pool several mornings each week.

Jameson, a Nashville native who came to UB in 1985 to take her teaching job, is subject of today’s What are you Eating? feature in WNY Refresh.

Georgetta L. Morque, of U.S. Masters Swimming, connected her with me as a way to help shine a spotlight on Adult Learn-to-Swim Month, which takes place in April.

Drownings are the fifth-leading cause of accidental deaths in America, according to the Swimming Saves Lives Foundation, the charitable side of U.S. Masters Swimming – which encourages adults to take swimming lessons.

Jameson was kind enough to share links to the following WNY learn-to-swim programs:

The YMCA 

The Town of Tonawanda Aquatic Center adult swim classes 

• UB adult class info can be received by emailing aquatics@buffalo.edu

Red Cross offers classes open to all ages 

More than one in three adults can’t swim 25 yards in the water, according to the Centers for Disease Control and Prevention.

Jameson can swim a lot farther than that, and urges those who want to get in better physical shape to join the Nickel City Splash Masters Swim Team. Find its website here

“The thing that’s moving to me is the number of people who have used membership on the team to come back from something awful or recover from something,” Jameson told me this week.

Some of the roughly 65 club members who swim routinely have had to step away from the pool for chemo. One woman member, while she was in a full body cast after an accident, decided to join the club when she recovered and vowed to compete in an Iron Man competition. “When we met her,” Jameson said, “she was training for the swimming part. It was sheer determination driving her.”

A former member threw a party to celebrate her 10-year anniversary of a life-saving kidney transplant, inviting the surgeon – and priest who had given her last rites – to celebrate with her, her family and club members.

“It is a tight-knit group,” Jameson said. “Some of us have been swimming together for as long as 17 years.”

Membership is limited to those aged 19 and up. The oldest member of the team is in his 80s, and he swims with his 59-year-old son. A couple of mother-daughter duos participate, as well.

Most team members do so for health and fitness reasons. Some are serious about competitions – mostly triathlons – and several members look to swim in the Masters Division World Championships this summer in Montreal. Others have the swimming basics down and want to improve their well-being.

“Speaking for the swimmers who swim close to my lane, most of us have moved to mainly vegetarian diets,” Jameson said. “We’re not fanatical but we’re disciplined. We’ll still go out and have a good time. We’ll have a party from time to time,” including a spot owned by one of the club members, Rocco’s Wood Fired Pizza in Clarence.

A bigger staple of Jameson’s diet is her main lunchtime dish, homemade vegetable stew on a bed of farro or quinoa.

Here’s the recipe she emailed to me:

(Makes about one week of lunches)

The base

•8-9 very ripe tomatoes

• 1 6-oz can of tomato paste

• 2 chipotle peppers, chopped

• 2-3 tablespoons of adobo sauce (from chipotle can)

• 1 fresh jalapeño pepper, chopped

• 1 3-inch piece of fresh ginger, grated

• 1 head of garlic, peeled (or use garlic paste)

The vegetables

• 4 broccoli crowns, broken into small florets

• 5 large carrots, cut into small chunks

• 2 large cans of black beans

• 4 large onions, chopped small

• 2 tablespoons olive oil

Spices

• 1 tbsp cumin seeds

• 1 tbsp garam masala

• 1 tbsp ground coriander

Prepare the base by blanching the tomatoes and removing the peels. Add to the saucepan the remaining ingredients listed under “base;” simmer for 10 minutes, then use a hand blender to turn into a smooth sauce. Pour the liquid into a large slow-cooker (or if you prefer a large saucepan). Turn the heat on low.

Add the broccoli, carrots, and beans. (I put in the water in which the beans are packed, so I don’t add any salt to the recipe.)

Heat the olive oil, onions and cumin seeds in a frying pan. When the onions start to turn yellow, add the remaining spices. Stir well, then slide the contents of the frying pan into your slow-cooked. Cover and cook until the vegetables are tender.

Serve over a grain of your choice, and garnish if you like with greek yogurt into which you have chopped some fresh mint and a hint of garlic.

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Bon appétit! (Mark Mulville/Buffalo News)


email: refresh@buffnews.com

Twitter: @BNrefresh

Stretch Pilates owner talks fitness, open house next weekend

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Larissa Mychaskiw, owner of Stretch Pilates & Fitness, works with Amy Pecoraro during a reformer class at the Williamsville studio. (Sharon Cantillon/Buffalo News)


By Scott Scanlon – Refresh Editor

Pilates is the cornerstone of Larissa Mychaskiw’s exercise life.

What else would you expect of the owner of Stretch Pilates & Fitness  in Williamsville?

Mychaskiw – a Ukrainian last name pronounced Mitch-as-Key – is subject of today’s In the Field feature in WNY Refresh.

She put me through my first Pilates training session nearly two weeks ago, and this might sound wrong to some of you other novices out there, but my favorite part was the stretching she led me through on the trapeze table. Those familiar with Pilates likely are nodding right now in agreement.

I felt like I was at the chiropractor’s and massage therapist’s offices, at the same time.

You can find out more about Stretch on the gym’s website or stop by at the fitness center, 1127 Wehrle Drive, Suite 20, from 8 a.m. to noon next Saturday for a free open house.

Mychaskiw has invited several of her fitness friends, whose services she avails herself of for a more complete workout.

They include Barre Centric and Burgio Health Alliance – two businesses that already have been featured in Refresh – as well as Balanced Nutrition, Crunch Fitness, acupuncturist Toni Haugen and Squeeze Juicery.

“If you really want to lose weight, you shouldn’t just do Pilates,” Mychaskiw said. “You should do barre, you should do everything. You need to learn how to eat, so we have Balanced Nutrition here, also.” Dietitian Melinda Yoder owns the nutritional consulting business, the Pilates instructor said. “If they sit with her a few times, she gets people on the right track.”

Stretch also has its fans. Amy Pecoraro, 57, of Williamsville, is among them.

“I’ve worked out for years and years and years. This is the best thing I’ve ever done,” said Pecoraro, who works in the UB MD Orthopaedics and Sports Medicine office of Buffalo Bills trainer John Marzo: “Flexibility is so important and you don’t do that much in a gym. I don’t come in here doing the same thing ever.”

Here are excerpts from my recent interview with Mychaskiw:

What would a typical week of fitness be for you?

I love yoga. I do Pilates at least twice a week. I do yoga one to two times a week. Sometimes, when I get a chance, I go to a barre class at Barre Centric. If I can do a little walking, I walk. I’m not a hardcore cardio babe. If I want to get my heart rate going, I’ll do harder exercises with Pilates or yoga. I do workouts that have all to do with strengthening and stretching and mind-body type stuff. The only one missing on my list is Tai Chi. I would love to do that.

What would an hour-long session be like with you?

An introduction to the equipment. It’s based on your goals and your health. If you would have come in here and said, ‘My back is killing me, I have a degenerative disc problem,’ your workout would have been totally different.

I’ve had some Buffalo Bills players come in here and I’ve said, ‘Woa, they are insanely in shape,’ and I have to do something totally different for them.

Is doing Pilates with someone who is older and has balance problems different?

Everyone’s different. Everybody’s workout is different based on why they’re here and what their goals are. We have 80-year-olds in here and we work on balance and core strength; those are the two big ones for them. We do a lot of ball work. The stretching is important to them because they’re tighter, and have a harder time moving around. We keep it much more basic.

Everybody starts as a beginner. I want people to learn how to use their body. I don’t want them to use the wrong muscles.

All folks can benefit?

Everyone from the young kids to the athletes to anyone who wants to feel differently and feel stretched. It’s like an oil change for your body, oiling your joints, getting things loose.

I first did it out of curiosity, but I lost inches off my hips and my abs, which I could never do before with weight training. With weights, I could never lose the inches I wanted around my waist. With Pilates, all of a sudden, I was a different size. It’s the springs.

Does Pilates help mentally?

I feel like much more of a positive, energized person after a workout.

How has the fitness competition changed in the last 24 years and how difficult is this business right now in Western New York?

Before recently, there were only just a few of us. Now, you seem to be seeing a lot of Pilates studios opening up. I think everybody’s looking to be their own boss, the make more money. They don’t understand what it takes to run a business, so God bless them, let them try it out.

How did you learn the business side of things?

I went to CEL – the Center for Entrepreneurial Leadership – at UB. That was awesome, one of the best things I ever did, in 2005.

How many clients do you have?

It fluctuates. We normally have over 200. In the summer, we’re booming, because we have a lot of people who live in Florida during the winter. We’re offering more time slots with more classes.

When it comes to some of these specialty fitness options, do you need to be in wealthier communities?

There’s two in Orchard Park, there’s a bunch out here in Williamsville. The customers understand what the $25 value (for most classes) really is. When you have an appointment, you are going to show up, because the last thing on the list sometimes is exercise. … The value is your health. You have to do something for yourself, and it’s a matter of what you really like and what you’re willing to spend the time and the money on, and make it a priority.

What would you say to people who don’t have the financial means? Is there any way those people could get into Pilates or do some of the exercises?

Here, people will come in and do a couple of sessions and they’ll ask for homework. We’ll give them assignments to do it at home and write it down for them. You can look this up on YouTube.

But when you have someone working with you one-on-one, looking at your body, at least we’ll get you started on the right path before you start doing things on your own and make mistakes and end up hurting yourself.

We can teach you five, 10 minutes of floor exercises or how to use bands. The most important part of any exercise program is form. It’s all about the form. If you don’t do it right, you’re not going to get the benefit. You’re going to get hurt.

The real big gyms, those are great, because they’re cheaper, but who there is going to get you (exercising properly)?

Can some people use insurance for your classes?

Flex Fit and BlueCross BlueShield will cover this. Those insurance plans give you a credit card that covers a certain amount of money per year.

How does Pilates benefit a woman who is pregnant?

When you’re pregnant, especially toward the end of your pregnancy, everything seems to hurt more, especially sciatica. This helps women ease that problem. They’re carrying a lot of extra weight, so their lower back hurts, their feet hurt, everything just hurts. This just helps them get through that process with a little bit less pain.

There almost seems to be a little bit of chiropractic training in here.

We work with two chiropractors from Naturally Chiropractic and we refer back and forth to each other. We’re the team. People who go there sign waivers so the doctors can communicate with me, so I can help them achieve their goals faster.

email: refresh@buffnews.com

Twitter: @BNrefresh

YMCA hosts family event Saturday, offers membership discounts this weekend

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Personal Trainer Kathy Bauer works with Pat DePrima at the Southtowns YMCA in West Seneca.(Mark Mulville/Buffalo News file photo)


YMCA Buffalo Niagara will host a free Family Expo and Healthy Kids Day from 1 to 4 p.m. Saturday at all six area branches.

The family play date will include face painting, bounce houses and games, family fitness classes, healthy snacks and swim time. You also can sign up your child up for YMCA summer camp on Saturday for a $10 deposit per week, per camper.

You also can save up to $75 on a YMCA membership if you sign up today through April 27. Free fitness classes, a 12-week fitness program, and unlimited use of the pool, wellness center, gym and child watch are included. For more information, call 565-6000 or visit
ymcabuffaloniagara.org.  

Mount St. Mary's offers disposal of unwanted prescription drugs

Those looking to rid their home of potentially dangerous expired, unused and unwanted prescription drugs may do so from 10 a.m. to 2 p.m. Saturday at the north entrance of Mount St. Mary’s Hospital, 5300 Military Road in the Town of Lewiston.

The federal Drug Enforcement Administration, which is overseeing the effort, cannot accept liquids, needles or sharps, only pills or patches. The service is free and anonymous, with no questions asked.

Power Authority seeks submissions for Saturday contest

The New York Power Authority invites visitors of all ages to submit a sculpture for a sculpture contest that is among featured events at its “Every Day is Earth Day” celebration, 10 a.m. to 4 p.m. Saturday at Power Vista.

Sculptures must be made with recyclable materials and can be dropped off at the Power Vista, 5777 Lewiston Road, Lewiston, anytime the electricity education center is open, and until 2 p.m.Saturday. Entrants are encouraged to be creative and draw inspiration from the world around them. For more info, call 286-6661.

Annual geranium sale happening now

The WNY Ovarian Cancer Project is in the midst of its annual geranium sale.

This sale supports free programs for women with ovarian cancer, including “Comfort & Hope Totes” given to every woman in the region newly diagnosed; local support groups; and the “Cancer Answers Program,” which provides a series of free lectures on topics pertinent to cancer survivors, caregivers, family and friends.

Order online at wnyovariancancerproject.org; cost is $34.95 per flat (10 4½-inch pots). For more info, call 946-6437.

Undy 5K brings much-needed awareness to colon cancer

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Tess Fraser, lead organizer of the Undy 5000 Saturday in Delaware Park, hopes others will learn from the painful lesson of the loss of her mother, Barbara Hogg. (Harry Scull Jr./Buffalo News)


By Scott Scanlon – Refresh Editor

Tess Fraser plans to run around Delaware Park in her underwear Saturday, and she’d like you to join her.

She doesn’t mind a little embarrassment if it can save lives.

Losing your mother to colon cancer can do that to someone.

“There are a lot of cancers that sneak up on you, but colon cancer is not one of them,” said Fraser, chairwoman of the Buffalo Undy 5000, a 5K race and fun run to benefit the Colon Cancer Alliance, which focuses on treatment and prevention.

She has organized the run three times since her mom, Barbara Hogg, died from the disease a little more than two years ago, at age 59.

“I don’t want other people to go through what our family went through,” said Fraser, 33, a married mother of two who lives in North Buffalo and works in nonprofit communications. “It was a horrendous experience.”

Hogg, whose maiden name was Ganley, was one of 11 siblings who grew up in Syracuse. She was the niece of Joe Ganley, a former longtime columnist for the Syracuse Post Standard.

As a young woman, she met Mark G. Hogg (pronounced Hogue), a Syracuse University student from Western New York, married him and moved to the Town of Tonawanda. The couple raised Fraser and her younger brother, Mark W.

Hogg, a teacher’s aide in the Ken-Ton School District, took care of her health. Three of her sisters battled breast cancer, so she religiously got mammograms.

Colonoscopies? Those never occurred to her, her daughter remembers, because nobody in her large Irish-Catholic family had ever had colon cancer.

“Her surgeon told me that her colon cancer was probably growing for close to 10 years,” Fraser said. “Just one colonoscopy during that time, we could have had a very different outcome.

“I don’t blame her,” she said. “I just think colon cancer needs to be talked about more, and people need to understand why, rather than saying, ‘I don’t want to go through the prep of getting a colonoscopy,’ the discomfort you’re going to feel in your 24 hours of prep is nothing compared to the discomfort you’re going to feel if you’re diagnosed with colon cancer.

“That’s what I have to say about it, and I nag everybody. It’s my new job: ‘Oh, happy birthday. You just turned 50? Are you going to go get screened?”

Many families need to hear such advice. Colon cancer is the second-leading cause of cancer death in the U.S., behind only lung cancer, even though 90 percent of cases are preventable, according to the American Cancer Society.

People 50 and older, as well as those with a family history of colon cancer, are encouraged to get a colonoscopy every five to 10 years, depending on whether precancerous polyps are discovered during one of their procedures, said Dr. Patrick Boland, a medical oncologist at Ros-well Park Cancer Institute who mostly treats patients with colon and rectal cancers.

Sixty percent of Americans in those risk groups are following the guidelines, according to a study published this year in “CA: A Cancer Journal for Clinicians,” but 40 percent are not.

“There’s a lot of room for improvement,” said Boland, who plans to run the Undy 5000 Saturday with “Bowel Movement,” a team of more than 20 others who specialize in gastrointestinal diseases at Roswell.

“A lot of people come out to this event because they have some type of personal connection,” Fraser said, “but a lot of people come out because they want to look goofy and run around in their underwear.” That’s fine, she said, as long as they support a good cause and learn something.

Most participants wear underwear over their shorts or sweatpants, as the Fraser and Hogg families plan to do.

“We’ve had people just wear underwear,” she said. “It’s mostly guys wearing goofy underwear. We’ve also had people bring their dogs – because dogs are welcome in Delaware Park – and put underwear on their dogs. There also will be a giant, inflatable walk-through colon.

“I can’t explain what it feels like to stand there and look out at the park,” Fraser added, “and see all of these people here who’ve all come together for this one cause. It completely warms my heart. It makes me proud to be a Buffalonian. I just think our city is amazing.”

A total of about 2,000 people participated in the first two runs, which raised more than $180,000 for the Colon Cancer Alliance, a national organization that helps coordinate 20 similar runs in cities across the country. Register for this year’s race at undy5000.org or stop out before the 9 a.m. fundraiser  Saturday.

Proceeds support the alliance, which channels part of the funds into colon cancer screenings in low-income Western New York communities as part of Independent Health Foundation’s Good for the Neighborhood program.

“There are others experiencing what our family did, there are some fighting like hell, and there are others who’ve gotten through it,” said Fraser. She said the Undy 5000 and her work with the alliance gives her hope.

“I think that by doing things like this … by using our voices and sharing stories, we can hopefully change the statistics,” she said. “That’s always what it comes down to for me: It shouldn’t be the second-leading cause of cancer deaths if it’s one of the most preventable cancers.”

email: refresh@buffnews.com

Twitter: @BNrefresh

WNY gets more skin in the dermatology ranks

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Dr. Robert Kalb talks with Beth Fildes, a nurse in his Buffalo Medical Group office. (Harry Scull Jr./Buffalo News)


By Scott Scanlon – Refresh Editor

Those who have been hospitalized in recent months and unable to get a dermatologist to come to their bedside, and others who suffer from psoriasis, can take heart from new developments in the Western New York medical community.

The University at Buffalo School of Medicine dermatology residency program has been reaccredited, and a doctor who is key to psoriasis treatment in the region is in line for more federal funding for his ongoing research on the skin condition.

The UB dermatology program lost is accreditation after four dermatologists left the region and the teaching of dermatology residents suffered as a result.

UB has since improved the program, which learned in February it would regain its lost status. It expects to staff one hospital in the region again come July.

“In the hospital where they’re going to open a clinic – I don’t know which one that’s going to be – they’ll see hospital patients,” said Dr. Robert Kalb, a Williamsville dermatologist and clinical professor with UB medical school.

Kalb is subject of today’s “In the Field” feature in WNY Refresh.

Our interview covered his medical training in New York City, the reaccreditation and the clinical trail work in his office. Below are excerpts I didn’t have room to include in Refresh.

Why don’t dermatologists ever go to a hospital in Buffalo?

In general, a lot of it has to do with the lack of the university dermatology program. Before, there was a doctor at Roswell, Womens & Childrens and Buffalo General Hospital. Then there was the shortage of dermatologists.

We’re going to see a couple again by summer but the real issue is UB is going to have to build up the dermatology program again. 

How does the dermatology shortage play itself out here?

The difficulty getting appointments. Some physicians are closed to new patients and in many cases, the wait is significant, six months if you call a new doctor. We do our best. This is a challenge across the country, but in the bigger cities not as much. Try to work through your regular doctor for an appointment. Usually, your primary doctor has a connection.

You got your medical degree from Downstate Health Science Center in Brooklyn and did your residency at the College of Physicians and Surgeons at Columbia University in Manhattan. Why dermatology?

Where I lived in New York City, in Brooklyn, there was a faculty member who had a dermatology practice close to where I lived. As a summer elective, I worked there because I could walk. This was my second year of medical school. It was fascinating. I pursued it from there. The chairman of the department at Downstate (Dr. Alan Shality) was a nationally known figure in the field and that helped me to get a residency spot.

Why the intense focus, including clinical trials, on psoriasis?

At Columbia, there was a psoriasis center. At the time, there were only two medicines used for psoriasis. One’s called phototherapy, and people would come to the hospital and stay for two or three weeks as inpatients and put on this crude coal tar – it’s like black tar – on their skin every day. Tar is a known treatment for psoriasis. If your run tar on your skin and get sunlight, it can help. The treatment would give you a suntan as well, so people would joke, ‘What happened to you, you’ve been gone two or three weeks,’ and they would say, ‘I went to Columbia.’ People would think Columbia, South America, not Columbia Presbyterian.

The other treatment was methotrexate, a pill you take once a week for psoriasis.

When I left Columbia, I was kind of a psoriasis expert. ... I worked in New York and then I came to Buffalo and started working with the university full-time. I started getting referrals from other doctors, other dermatologists, of patients with psoriasis. From there, we started doing clinical trials and it kind of snowballed.

Are there any sort of triggers you suspect? Are food insensitivities involved?

In psoriasis, they’ve looked at that, and with very few exceptions food does not play a role. There are patients who notice a correlation with stress, patients who notice a correlation with infections in general – if you get a bad cold or bad flu – but with a vast majority of patients, it tends to be a more chronic disease. They just have it and it stays. There’s a small minority who have the disease and it goes up and down, they’re fine and then it flares.

Some of the treatments have been likened to diabetes, where you have to take an insulin shot every day. With psoriasis, it’s a control, not a cure, so whatever the medicine is, you have to stay on it (whether it’s a pill or newer injection medication). A lot of people choose to go off the medication and, predictably, it comes back. It’s not a total cure for many patients ... but they’re controlled for the most part.

What are the most common symptoms and concerns?

Some people have it in a tiny, little spot, so it’s not a big deal. Some people have it much more widespread. A lot depends on how much of the body surface is involved. It’s a big spectrum. Generally symptoms include scaling of the skin. You can have significant itching with the lesions on the skin, open areas and slightly raw areas, so it can be tender, uncomfortable. People who have psoriasis on their hands and feet, it may be hard for them to grasp things, it may be somewhat painful to walk. Some may have it fairly significantly in the genital area, so interpersonal relations become an issue.

How does onset work?

There’s two groups of patients. The first age of onset is usually in the late teens or early 20s, then there is a second group that their psoriasis usually comes at about 45, 50, but it can occur at any age.

In terms of some of the concerns?

Patients with psoriasis have a higher incidence of other conditions – inflammatory bowel disease – but the main issue is arthritis. About one-third of patients with severe psoriasis have arthritis. Then, there’s the possible connection with heart disease, so the systemic inflammation can lead to arthritis, heart disease.

So what you see on the skin is only part of the story?

Correct. Psoriasis is not a skin disease, it’s a total systemic disease.

How does inflammation figure into it?

With heart disease, it used to be thought that blood vessels were like pipe and you blocked the pipe. It’s not true. Heart disease, systemic inflammation, leads to the buildup of these plaques. Block the inflammation and in many cases you can improve the tendency toward prevention of heart disease. We know that psoriasis is a risk factor. The question is, if you treat the skin, do you reduce the chance of heart disease? That’s one of the questions we’re trying to answer right now.

Can you talk about those trials? How do they work and what have so far been your findings?

The latest research in psoriasis is on medications called ‘biologics.’ A biologic medicine is made in a living cell and in general has to be injected. In general, the biologic medicines will block a specific chemical, a cytokine (that causes symptoms). In general, the patients for the first 12 weeks will get a biologic medicine or a placebo injection. After the 12 weeks, the people who are on the placebo will get the real medicine. So everyone in the trial has the medicine eventually.

In some of the trials there may be a third arm, where there’s another medicine researchers are comparing to the first medicine, because they want to know what happens after the first 12 weeks.

Everyone stays on medicine and then we measure them for the long run, so a lot of these trials last over five years. It’s not only to measure how the medicine works but any potential side-effects. There are different trials with different medicines that block.

Some of the medicines block Tumor Necrosis Factor (TNF). That’s one of the cytokines, so we’ve done trials with some of the TNF-blocking agents. Now there’s other ones that block – Interleukin 17, Interleukin 23 – so there’s different chemicals that block. With the Interluken 17 drug, the efficacy has been dramatic. There’s people who just totally clear right up. We’re starting a new trial with an Interleukin 23 blocking agent. We have another trial where we’re comparing one of these blocking medications to the phototherapy, which historically has been a good treatment, to see if it blocks the inflammation and helps in terms of heart disease. There’s a special PET scan, which people have before treatment and after treatment. If this PET scan improves, it’s an indirect measure of their heart disease risk.

In that trial, we don’t have the results yet.

Do you find that in that 12-week window these medications work quickly?

Yes, very quickly. Sometimes, in a matter of four weeks, patients can be totally clear. Not everyone.

So not everyone sees the same results?

Absolutely. If you get the same treatment, for some patients, it doesn’t work at all and then the next treatment looks great. The issue is can you identify ahead of time which treatment works best? Should you use conventional treatments first and, if they don’t work, move on to some of these biologic medicines.

What does this tell you about the disease?

It’s probably different genetically, that they have different chemicals that stimulate their immune system. One theory is if one medicine that say, blocks the TNF, and doesn’t work, switch to something different to see if that works.

When we do this research, I’m one site. There’s other sites, so there may be 1,000 patients. It’s not just psoriasis, but genetically, they’re probably different. If we can identify those specific genes, you’d probably be able to treat them better.

Do you use one drug at a time?

Generally yes. We will use a combination of drugs for the tougher cases.

What are you using here?

Phototherapy, which is a standard treatment. We use methotrexate, which is a pill once a week. We use Cyclosporine, which is the drug that revolutionized kidney transplants. That’s very effective in psoriasis. Then we use the biologic agents: Enbrel, Humira, Remicade, Stelara.

How many people do you need for your research and how many have already gone through the clinical trials?

With any given trial, there may be five, 10, 15 patients, but these are multi-center trials, so there’s different centers across the country, but in general these trials are trying to enroll 500 to 1,000 patients.

What tends to be the compensation for patients in these trials?

Free care, free laboratory tests any X-rays, cardiograms, anything involved in the trial. In some of the trials, there’s also compensation for the patients. It’s not a lot. They may get $25 or $50 a visit, depending on what study.

What about lotions or ointments? Which tend to work best?

For patients with limited disease, in general we use topical medicine and it’s very effective. The disadvantage is patients have to keep using it or the psoriasis will come back, so people get frustrated. If it’s just a few spots, it’s not a big deal, but if it’s more than a few spots, it’s difficult to put cream on all the time. We have a trial coming up for different topical treatment.

For normal trials, patients generally have to have psoriasis on 10 percent or more body surface area. For the topical trial, you just need a few patches.

(Kalb said he has about a half-dozen trials going on at any given time “and each one’s a little different.” There are different inclusion criteria. Folks are screened. If someone is interested, call 630-1457.)

Psoriasis3

Psoriasis1
Dr. Robert Kalb of Williamsville is doing clinical trials on those suffering with various levels of psoriasis.


email: refresh@buffnews.com

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Scott Scanlon

Scott Scanlon

Scott Scanlon is an award-winning reporter and editor who has covered various topics in his quarter-century as a journalist in South Florida, Syracuse and Buffalo. He is aiming to pass along what he is learning these days about health, fitness, nutrition and family life.

@BNRefresh | refresh@buffnews.com

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