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Archive for the ‘Arthritis’ Category

Hurst Morris People barn dance helps Arthritis Research – The Wokingham Paper

Monday, March 13th, 2017

HURSTMorris People welcomed a record number over 100 to their barn dance which raised funds for Arthritis Research UK.

One important guest was forced to sit and watch the dancing in Hurst Village Hall. June Forbes, a retired bookkeeper, who has had arthritis pain for 35 years, is waiting for her knee to be replaced.

Her sister, Ann Wilson of Wokingham, is a Hurst Morris (Hump) dancer and proposed the charity as Humps annual good cause.

June has arthritis in her feet, knees, back, hands and one shoulder. Shes had her other shoulder replaced. Her bad knee stopped her dancing on Saturday.

June gave a moving speech, to explain that more than one in six UK people have arthritis. She wanted more research into alleviating arthritis pain, and even finding a cure.

She is determined. Being positive is important. At times I feel like death when I get up. But its no good lying in bed, you stiffen up, she said earlier. I have quite aggressive rheumatoid arthritis as well as osteoporosis.

Five years ago she started a new drug which helps the pain. She still suffers extreme fatigue, but believes exercise keeps her so mobile. I walk one mile a day. Even sitting on a bus I do exercises to stop my toes curling under, she said.

She also credits a private clinics diet for helping her but says the diet is not supported by many doctors.

Humps squire (leader) Karen Ricketts said: Were delighted to support this worthwhile charity. And were grateful to all the people who came, making it a memorable barn dance. We had superb music by Chris, Patsy and Friends and good, clear, calling by Howard Ballard.

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1 in 4 US Adults Disabled by Arthritis: CDC – WebMD

Monday, March 13th, 2017

By Margaret Farley Steele

HealthDay Reporter

TUESDAY, March 7, 2017 (HealthDay News) -- Arthritis is expanding its grip on Americans, with 24 million adults limited in their everyday activities because of the debilitating joint disease, U.S. health officials say.

Overall, 54 million adults -- or one in four -- report an arthritis diagnosis. And the number of people disabled by it has jumped 20 percent since 2002, the U.S. Centers for Disease Control and Prevention reported Tuesday.

"Arthritis symptoms keep millions of Americans from going about their daily routines," CDC acting director Dr. Anne Schuchat said in an agency news release.

The joint aches, stiffness and swelling of arthritis can make holding a glass, carrying a grocery bag, or walking a short distance difficult or even impossible, the agency said.

Why so many Americans have arthritis isn't clear, and can't be attributed solely to an aging population. Almost two of five adults with arthritis are of working age -- 18 to 64 years old, the CDC said.

The most common types are osteoarthritis, which is age-related wear and tear; rheumatoid arthritis; gout; lupus; and fibromyalgia, the CDC reported.

Arthritis costs at least $81 billion in direct medical costs annually, the agency said.

Although narcotic painkillers are often prescribed for arthritis, other options are safer, the CDC added.

Instead of opioids, doctors and loved ones can encourage people with arthritis to exercise and watch their weight. "Physical activity is a proven strategy to ease pain and reduce symptoms among people with arthritis," Schuchat said.

Exercise -- such as walking, swimming or biking -- can reduce symptoms by as much as 40 percent. Yet, about one-third of adults with arthritis aren't active, the CDC noted in its March 7 Vital Signs.

Self-management education is another important arthritis tool that doctors need to recommend, the report co-author said.

Along with physical activity, "it is just as important for them [doctors] to motivate their patients to attend workshops to learn how to better manage their arthritis," said epidemiologist Kamil Barbour, of the CDC's National Center for Chronic Disease Prevention and Health Promotion.

People are more likely to attend an education program if a health care provider recommends it. But to date, only 1 in 10 Americans has participated in this type of program, the CDC reported.

The report also found that arthritis frequently occurs with other health conditions, namely heart disease, diabetes or obesity. These conditions become harder to manage with arthritis, the agency said.

WebMD News from HealthDay

SOURCE: Vital Signs, U.S. Centers for Disease Control and Prevention, March 7, 2017

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Central Catholic student goes to Washington to talk about arthritis – Grand Island Independent

Monday, March 13th, 2017

When she gets home after basketball practice, Hayley Henke appreciates the chance to soak in the familys hot tub. The fact that the hot tub is outside doesnt bother her, even when the weather is cold.

The hot water brings relief to her knees.

Henke, 13, has juvenile rheumatoid arthritis, which causes joint inflammation and stiffness.

For Henke, the discomfort is worse when she gets up in the morning or after shes been active. An eighth-grader at Central Catholic, she takes part in volleyball, basketball and track.

The arthritis bothers her fingers, ankles, toes and wrists, but the greatest pain is in her knees.

After shes been running a while, she sometimes has to take a break at practice. Last year, she ran the 400 meters in track, but this spring she will concentrate on the 100- and 200-meter dashes, because the longer distances are harder on her knees.

Henke was diagnosed with arthritis when she was in first grade. It was especially difficult in the first six months before the condition was diagnosed and in the following six months it took to see a doctor. The pain was so bad that Henke would sometimes curl up in her mothers lap.

Henke has undergone 10 knee surgeries. During those procedures, a doctor scopes the knee to assess damage to the joints, drains the fluid and injects steroids.

Both of her knees will have to be replaced before she turns 18.

Henke returned last week from Washington, D.C., where she was one of two Nebraska representatives at the Arthritis Foundation Advocacy Summit. The event ran March 5-7 at the Renaissance Arlington Capitol View in Arlington, Va.

Henke was one of about 45 people who spoke at the Capitol to an audience that included members of Congress. She also met with Sen. Deb Fischer (R-Neb.) and people who work on medical issues for Sen. Ben Sasse and Rep. Adrian Smith.

Henke urged the Nebraskans to join the Congressional Arthritis Caucus. Nebraska is one of five states not represented in that group. The health representative from Smiths office seemed especially interested in her information, Henke said.

In her talks, Henke told her story and reminded people that children and teenagers can be victims of arthritis.

Stephanie Henke appreciates her daughters strength. Its been fun to watch her grow and be able to speak to the groups in Washington, she said.

As a Junior Platinum Ambassador for the Arthritis Foundation, Henke is given a monthly task to call attention to arthritis.

On the trip to Washington, she and her mom were accompanied by Hayleys fraternal twin, Kennedi.

Every Sunday, Stephanie injects a medicine called methotrexate into her daughters thigh. That drug prevents joint damage and is helpful.

But every Sunday night and Monday, Henke is nauseous. Fortunately, methotrexate doesnt make her throw up anymore.

Henke has trouble typing as fast as her classmates. After she types for a while, her fingers get stiff. But shes still up to 32 words a minute.

After each one of her knee surgeries, she needs crutches or a wheelchair to get around for about a week.

When she wakes up each morning, she knows if the weather is about to change. She feels stiffness or pain in her joints.

Because rheumatoid arthritis is an autoimmune disease, regular illnesses take a greater toll on Henke.

She ended up in the hospital last year for just a common flu, Stephanie said. That hospital stay lasted five or six days.

Shes partially blind in one of her eyes from the arthritis, her mother said.

But Henke is a member of Central Catholics student council.

Twice, she won scholarships to Juvenile Rheumatoid Arthritis conferences one in Florida and one in Arizona.

Hayley appreciates that her dad, Brad, bought the hot tub. Soaking in a bathtub also helps her knees.

Hayley is one of four kids in her family. She and Kennedi will turn 14 on April 28.

Connor, 15, is a ninth-grader at Central Catholic.

Cedric, 8, is in second grade at Stolley Park Elementary School.

Stephanie works at Central Catholic as a library technology aid weekday afternoons.

Because of the support of local Shriners, Henke receives medical care at Shriners Hospitals for Children in Minneapolis.

She also sees a childrens rheumatologist twice a year in Omaha.

Stephanie is the only other member of the family who suffers from arthritis. She has arthritis in her ankles.

The family is grateful for the Affordable Care Act, because the insurance covers pre-existing conditions. They hope that the replacement for ObamaCare will do the same.

In sports, Henke puts her practice time to good use. Even when she cant run, shes able to do other things, such as sit-ups.

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Arthritis afflicts about 1 in 4 adults in the US, CDC report finds – Charleston Post Courier

Monday, March 13th, 2017

About one in four adults in the United States suffers from arthritis, according to a new Centers for Disease Control and Prevention Vital Signs report published Tuesday.

Of the 54 million people in the United States who have this debilitating condition, not all are elderly. About 60 percent of those with arthritis were between the ages of 18 and 64, that is, working age. Activity limitations from arthritis increased by 20 percent since 2002, the report found. Simple, everyday tasks, such as walking or lifting bags, are challenging for 24 million people affected by the condition in the United States.

Even though movement is painful and difficult for people with arthritis, the report suggests that increased physical activity can mitigate arthritis symptoms by 40 percent. Despite the proven health benefits of physical activity for arthritis symptoms, about 1 in 3 adults with arthritis in the United States self-reports being physically inactive.

Arthritis is typically treated with non-steroidal anti-inflammatory drugs and analgesics, among other types of medication, including opioids. However, the CDC Guideline for Prescribing Opioids for Chronic Pain recommends use of other strategies known to have less risk associated with them, such as exercise therapy.

Other coping strategies for arthritis symptoms, such as interventions to help people understand and manage the disorder, can help boost peoples confidence when dealing with the condition and reduce pain, stress, depression and fatigue by 10 to 20 percent, the report found. But only 1 in 10 adults takes part in such education programs in the United States. They are more likely to participate in these programs if a health-care provider recommends them, according to the report.

The report found that prevalence of arthritis among adults with pre-existing conditions, such as heart disease and obesity, is high. About half of all the adults diagnosed with heart disease had arthritis, and nearly one-third of adults who were obese had arthritis. These conditions in combination with arthritis can be difficult to manage, according to the report.

The researchers analyzed data collected between 2013 and 2015 from the National Health Interview Survey, which is a nationally representative annual in-person interview survey of the health status and behaviors of the non-institutionalized civilian U.S. adult population.

The study has some limitations. Among other things, people who responded to the survey self-reported that a doctor diagnosed them with arthritis, which was not confirmed by a health-care professional. Social desirability might have also biased peoples responses about their level of physical activity in daily life.

Because so few people participate in education programs for arthritis self-management strategies or are physically active, the CDC hopes to conduct future research to convince people to become more active and learn more about self-management strategies for arthritis, said Charles Helmick, a senior medical epidemiologist with the Arthritis Program at the National Center for Chronic Disease Prevention and Health Promotion, part of the CDC.

Over the course of the last 15 or 20 years, the burden of arthritis has only been growing, said Rowland Chang, a professor at Northwestern Universitys Feinberg School of Medicine, a rheumatologist at the Rehabilitation Institute of Chicago and chair of the Arthritis Foundations Board of Directors.

Like the CDC, the Arthritis Foundation hopes to improve the lives of people with arthritis.

The foundation really believes we need to accelerate research into the pharmaceutical side to find better treatments for osteoarthritis because if we dont, we wont be able to bend the cost curve in this country, Chang said.

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New natural treatment hailed as a ‘new dawn’ for arthritis sufferers – Express.co.uk

Sunday, March 12th, 2017

GETTY

Scientists have discovered the drug combination, which has few or no side effects, can both relieve pain and potentially reverse the damage caused by the disease.

Preliminary data has been so promising that experts at Liverpool University have launched an accelerated programme of trials and hope to have a therapy on the market within five years.

Until now medications have been designed only to help relieve pain, but these have side effects, including stomach ulcers, high blood pressure and even stroke.

However, the researchers say this combination of drugs is likely to be almost free of side effects. Now human trials are to be launched into the therapy, known as APPA.

Scientists say the results could be a game changer in the treatment of the condition, which is the leading cause of joint pain and stiffness in the UK, affecting more than eight million people.

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They also believe it has the potential to treat other painful inflammatory disorders such as rheumatoid arthritis.

This could herald a new dawn and new era in the treatment of this disease

Professor Robert Moots

Professor Robert Moots, of the universitys Institute of Ageing and Chronic Disease, who is leading the study, said: There have been many false dawns in the past in the treatment of osteoarthritis but this is without doubt the most promising.

The severe pain from osteoarthritis is usually managed with prescription drugs that are often not effective and that also, in many cases, induce unacceptable side effects. In many cases, major joint replacement surgery is needed to help deal with the pain.

GETTY

This drug contains synthetic versions of two natural products, neither of which appears to show toxicity. Each on its own could be helpful but the combination of the two seems to be a potential winner. This could herald a new dawn and new era in the treatment of this disease.

The trials are designed to test how well this therapy works and evaluate the safety. This could save large amounts of money for the NHS and provide improved quality of life for millions of patients.

GETTY

Professor Moots added that APPA also had phenomenal potential for other conditions.

This might be effective in treating a range of other inflammatory conditions such as rheumatoid arthritis and might even help prevent muscle ageing, which may be driven by inflammation. The potential of this drug could be phenomenal, he said.

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Arthritis advocacy gives hope and control for Kansas woman – Wichita Eagle

Saturday, March 11th, 2017

Wichita Eagle
Arthritis advocacy gives hope and control for Kansas woman
Wichita Eagle
Penner, who is from North Newton, was honored this week with the Arthritis Foundation's 2016 Edward M. Kennedy Advocacy Award. She was joined in Washington, D.C., by around 400 other arthritis patients and met with members of Congress to ask for ...

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Hill Point 20-something endures through arthritis – Reedsburg Times Press

Saturday, March 11th, 2017

Holly Dwyer never knows when shes going to wake up in pain and unable to move.

The 21-year-old college student from Hill Point has a condition many associate with old age: arthritis. Dwyer has lived with the condition since she was about 6 years old, and now shes working to spread the word about juvenile patients.

Holly has been chosen as the adult honoree for this years Walk to Cure Arthritis in Dane County. Prior to the May 6 event, Hollys family will host a few fundraisers to raise money for their team. The funds will support research efforts to find a cure.

Most days Holly can find a way to stretch and manage her pain and stiffness but there are times where she needs to stay home. She said shes studying psychology at Viterbo University in La Crosse and doesnt like to miss out on school or work but sometimes her body gives her no choice.

There are days where I try to make it down the steps of my apartment and Im crying, she said. Its days like that where you have to hope for a better tomorrow.

Hollys struggles started in kindergarten when her gym teacher noticed her unusual gait while running. Her mother, Kathy Dwyer, was advised to take her daughter in for medical evaluation. Kathy said she hadnt noticed anything off about Holly but heeded the teachers advice. Holly said she initially believed she was flat footed but doctors finally figured out what was wrong around her 8th birthday.

Kathy remembered being shocked by the diagnosis.

Your initial reaction is you just cant believe a child can have this, she said.

Holly said she has juvenile idiopathic arthritis, which differs from rheumatoid or osteoarthritis. No one knows what causes this condition and it affects everyone differently.

To this day, Holly needs to take NSAIDs and low-grade chemotherapy medication to treat this autoimmune disease. She started with pills but ended up needing injections. Kathy said adults administered the shots in the beginning but Holly was brave enough that she could do them on her own by age 10.

The chemotherapy has lovely side effects like grogginess and nausea, she said.

Shes also had several surgeries. She had her first total hip replacement at age 16, followed by the other at age 18. She also needed nerve relocation in her hand and elbow to prevent muscle atrophy and loss of sensation. Holly said almost all her joints are affected in some way by arthritis.

The surgeries were necessary for her to attend college and pursue a career, so she perseveres through the pain. Stiffness is common in the morning so she uses stretching and monitors her physical activity. Its been this way ever since she was a little kid.

My family used to joke and call me Grandma, she said.

Sometimes she needs crutches to get to class but she does all she can to make it, she said.

Juvenile arthritis is more frequent than most people think. More than 300,000 children and teens are living with arthritis in the U.S. Of those, about 6,000 live in Wisconsin, said Hana Johnson, market relations coordinator for the Arthritis Foundations Madison-area office.

Johnson said the walk not only tries to raise money but also spread the word about the far-reaching effects of arthritis.

A lot of people think of arthritis as an old persons disease, she said.

She said the office chose Holly as an honoree because she has been active with the Foundation since she was a little girl. She previously attended Camp MASH for children with autoimmune disorders and now volunteers as a counselor. Holly has also been willing to tell her story.

Holly will speak during the Dane County walk and will help kick it off with other honorees. Participants do not need to be residents of Dane County to participate, Johnson said.

Holly said shes glad to be part of the Arthritis Foundations efforts to support patients and their families.

We dont have to accept the pain as a forever situation, she said. We may have arthritis but arthritis doesnt have us.

Follow Heather Stanek on Twitter @HStanek1.

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Verdict still out on whether running contributes to arthritis in the knee – Fairfield Daily Republic

Saturday, March 11th, 2017

Running, as a sport or hobby, confers undoubted health benefits.

Runners tend to be less overweight and more fit from a cardiovascular standpoint. Running may also mitigate against depression, diabetes and other ailments.

Researchers, however, are consistently unable to agree whether running is harmful to joints.

A new study, published by investigators from major medical centers across the country, suggests that running does not predispose runners to symptomatic knee degenerative arthritis. The authors also contend that running is not detrimental to the knees.

Previous studies of elite runners have yielded conflicting results.

For example, a propensity to develop more arthritis was observed, but not consistently. The problem is that elite runners tend to be a self-selected cohort. In lay terms, they are the holdouts who escape major joint pain, and therefore keep running.

No one is interested in the ex-runners who quit the sport, due to knee or hip pain. Consequently, researchers sometimes under-estimate the amount of joint damage running causes. Or they might overestimate the damage, by focusing on intense runners with punishing fitness routines.

No one knows, really.

Grace Lo and her collaborators, using data from the Osteoarthritis Initiative public-use data set, attempted to address these concerns, publishing a study of 2,637 recreational runners in Arthritis Care & Research.

Participants were studied retrospectively, or looking back in time. The likelihood of developing knee pain, or symptomatic knee osteoarthritis, appeared to be no higher in runners, compared to non-runners.

Data collected over eight years after enrollment in the Osteoarthritis Initiative seemed to confirm the findings. Physical activity surveys, and X-rays bolstered the conclusions, that Running does not appear to be detrimental from a knee health perspective.

Intriguing as this study is, it still does not completely settle the question of whether recreational running damages knees. That would be too much to ask from a single study.

I note that 2,159 of the original 4,796 persons enrolled in the Osteoarthritis Initiative did not complete the full survey process.

How did those participants fare?

The authors reached overly broad conclusions regarding knee health in runners.

Could some participants have suffered minor structural damage from running that the study was not designed to capture?

Criticisms aside, Lo and colleagues deserve credit for casting their gaze beyond elite runners. Their subjects were an average of 60 years and pursuing running as a top-3 recreational activity.

We need more data on the Average Joe and Average Jane runner. Nearly two-thirds of the self-reported runners in this study, by the way, were men.

Perhaps a prospective study, looking into the future, would be more enlightening.

We could conceivably randomize young adults into groups that run, perform low impact exercise, or are sedentary. Follow-up study with interviews, examinations, and radiographs could be performed one or two decades later.

Who would want to sign up for managing such a long process? Imagine the costs and commitment, for subjects and researchers alike. At the gym, I see athletes in their 20s sprinting on the running machines. Middle-aged persons walk purposefully, on the same devices. The elderly walk even more slowly, or switch to stationary bicycles.

A small amount of knee pain may be physiologically useful. Pain fibers tell us, as we age, how to exercise prudently. We dont want to be tore up from the floor up, as a gentleman once described his health status to me.

A cost-benefit analysis makes sense. It might be worth incurring a bit of arthritis, if our recreational activities ward off heart disease.

Watching television all day is not the answer.

Good luck in finding an exercise program that works for you.

Scott T Anderson, MD, PhD (email [emailprotected]), is Clinical Professor, UC Davis Medical School. This article is informational, and does not constitute, medical advice.

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New spin out focuses on arthritis data-sharing – Lab News

Saturday, March 11th, 2017

Mancunian researchers have created a new social enterprise to develop new tests and treatments for a range of musculoskeletal conditions such as rheumatoid arthritis.

Through Inspiral Biomedical Limited, these scientists will be making biological samples and data collected over the past two decades at the University of Manchester, available to other academic and industry researchers.

Inspiral Biomedical Ltd Chairperson, Professor Anne Barton, said: We know that our bank of biological samples and data holds an unprecedented opportunity to gain a better understanding of these conditions and how best to treat those individuals affected.

Musculoskeletal (MSK) conditions can greatly affect peoples quality of life. More than 20% of the UKs population consult with a GP about MSK complaints and this number will rise as the population ages.

Professor Barton said: In Manchester, we are already utilising this data, but by making it available to other academic and industry researchers across the world will be able to bring new tests and treatments to patients more quickly.

Inspiral Biomedical Ltd is composed of Professor Wendy Thomson and Dr Steve Eyre, who in addition to Professor Barton. All three are from the Arthritis Research UK Centre for Genetics and Genomics.

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Arthritis afflicts about 1 in 4 adults in the US, CDC report finds – Washington Post

Friday, March 10th, 2017

By Jia Naqvi By Jia Naqvi March 7

About one in four adults in the United States suffers from arthritis, according to a new Centers for Disease Control and Prevention Vital Signs report published Tuesday.

Of the 54 million adults in the United States who have this debilitating condition, not all are elderly. About 60 percent of those with arthritiswere between the ages of 18 and 64, that is, working age. Activity limitations from arthritis increased by 20 percent since2002, the report found. Simple, everyday tasks, such as walking or lifting bags, are challengingfor 24 million peopleaffected by the conditionin the United States.

Even though movement is painful and difficult for people with arthritis, the report suggests that increased physical activity can mitigate arthritis symptoms by 40 percent. Despite the proven health benefits of physical activity for arthritis symptoms, about 1 in 3adults with arthritis in the United States self-reports being physically inactive.

Arthritisis typically treated with non-steroidal anti-inflammatory drugs and analgesics, among other types of medication, including opioids. However, the CDC Guideline for Prescribing Opioids for Chronic Pain recommends use of other strategies known to have less risk associated with them, such as exercise therapy.

Other coping strategies for arthritis symptoms, such asinterventions to help people understand and manage the disorder, can help boost people's confidence when dealing with the condition and reduce pain, stress, depression and fatigue by 10 to 20 percent, the report found. But only 1 in 10 adults takes part in such education programs in the United States. They are more likely to participate in these programs if a health-care provider recommends them, according to the report.

The report found that prevalence of arthritis among adults with preexisting conditions, such as heart disease and obesity, is high. About half of all the adults diagnosed with heart disease had arthritis, and nearly one-third of adults who were obese had arthritis. These conditions in combination with arthritis can be difficult to manage, according to the report.

The researchers analyzed data collected between 2013 and 2015 from the National Health Interview Survey, which is a nationally representative annual in-person interview survey of the health status and behaviors of the non-institutionalized civilian U.S. adult population.

The study has somelimitations. Among other things, people who responded to the survey self-reported that a doctor diagnosed them with arthritis, which was not confirmed by a health-care professional. Social desirability might have also biased peoples responses about their level of physical activity in daily life.

Because so few people participate in education programs for arthritis self-management strategies or are physically active, the CDC hopes to conduct future research to convince people tobecome more activeand learn more about self-management strategies for arthritis, saidCharles Helmick,a senior medical epidemiologist with the Arthritis Program at the National Center for Chronic Disease Prevention and Health Promotion, part of theCDC.

"Over the course of the last 15 or 20 years, the burden of arthritis has only been growing," said Rowland Chang, a professor at Northwestern University's Feinberg School of Medicine, a rheumatologist at the Rehabilitation Institute of Chicago and chair of the Arthritis Foundation's Board of Directors.

Like the CDC, the Arthritis Foundation hopes to improve the lives of people with arthritis.

"The foundation really believes we need to accelerate research into the pharmaceutical side to find better treatments for osteoarthritis because if we don't, we won't be able to bend the cost curve in this country," Chang said.

Read more:

I thought I was too young for arthritis. I was wrong.

Gout, a form of arthritis, is no longer limited to the well-to-do

Mental illness and heart disease are often found in the same patients

Women with diabetes are especially prone to developing heart disease

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Rocker Dan Reynolds ‘grateful’ for struggles of arthritis condition – Music News

Friday, March 10th, 2017

Imagine Dragons frontman Dan Reynolds has drawn strength from his debilitating battle with chronic arthritis pain and used it as inspiration for the band's new material.

The Radioactive singer spoke candidly to People magazine in November (16) about his struggles with ankylosing spondylitis (AS), a type of arthritis which causes long-term inflammation of joints in the spine.

Dan admitted the illness had plagued him during the group's rise to fame, and really left him in a "bad place", especially as the rockers worked on their 2015 album Smoke + Mirrors.

"Right at the beginning of Smoke + Mirrors was really when A.S. was rearing it's head in a big way," he recalls in a new interview with People. "It was the beginning of the disease in a lot of ways for me and learning to manage it. So physically I was in a quite a lot of pain, and mentally I was in a very bad place as well."

Dan has since gotten to grips with the condition, which now allows him to better manage his symptoms, and as a result, he has been enjoying "a very healthy year" after much "physical and mental work".

Fighting through the health struggle has made him a more positive person, and now he's able to recognise it has only made him stronger.

"I'm grateful for it," he says. "Looking back in this last year from a place of health, you're able to have greater perspective and I've had more perspective to see that a lot of the great things in my life are due to struggle.

"A lot of my greatest strengths are due to my greatest weaknesses or flaws or physical ailments. It brought me discipline, gratitude and compassion."

Dan channelled his emotions about his illness into the band's new single Believer, making it a really personal track to perform.

"The song is about how pain made me a believer," he shares. "It's made me a believer in myself, it's made me a believer in my art and work. I wouldn't have my art if it wasn't for pain. It takes somewhat of a healthy place to appreciate it because when you're in the midst of it you don't appreciate it. You're just upset."

Despite Dan's health turnaround, he insists there are still days when he struggles with severe pain, but he is urging others suffering from similar ailments to keep pushing through.

"With depression or A.S., it's not just a pit for the rest of your life or this downward spiral. It's the beginning of something that is going to cause you to have to grow to make changes," he concludes. "While it can seem bleak right when you're diagnosed, there are management plans so that's why it's so important for it not to remain a hidden disease and that awareness is raised."

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Natural remedies available for nagging arthritis pain – The News (subscription)

Friday, March 10th, 2017

Are there natural remedies for arthritis? exercises that could help? my pain is in the upper arms and shoulders.

Dear Reader: Osteoarthritis, the kind that youre describing, is caused by degeneration of the cartilage within a joint. Without the cartilage, one bone rubs upon the other, leading to pain and degeneration of the bone.

Doctors typically recommend nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, naproxen and aspirin; acetaminophen; and, more rarely, opiates. But NSAIDs can increase the risk of stomach ulcers and kidney problems when used chronically; acetaminophen at high doses can cause liver problems when used chronically; and opiate medications can lead to addiction. So I can understand your desire to look for an alternative for the pain.

The supplements chondroitin sulfate and glucosamine have been used for osteoarthritis for years. Chondroitin is one of the building blocks of cartilage in our body, so many people naturally believe that taking chondroitin can decrease the pain of arthritis.

A 2015 review of 43 randomized trials compared the use of chondroitin alone or in combination with glucosamine against the use of a placebo. Most of these studies looked at treatment for arthritis of the knees, with some looking at arthritis of the hips and hands. The studies measured pain on a 100-point scale. The use of chondroitin was found to be beneficial, whether with or without glucosamine, showing a small 8-point difference in pain compared with placebo. It didnt ease the stiffness and lack of mobility associated with arthritis, however.

In another study, a randomized trial of 606 patients with pain from osteoarthritis of the knee compared the use of glucosamine with chondroitin against the anti-inflammatory drug celecoxib (Celebrex). After six months, both groups found a greater than 50 percent reduction in both pain and joint swelling. What was interesting about the study was that it took a while for the glucosamine/chondroitin to work. At one to four months, Celebrex was much better at improving pain, but at six months it was no different than the glucosamine/chondroitin combination. So with the use of glucosamine and chondroitin, it is important to be patient.

The supplements MSM (methylsulfonylmethane) and DMSO (dimethyl sulfoxide) are anti-inflammatory agents that have been studied in arthritis of the knees without evidence of benefit, but its possible they could decrease pain in the joints of the hands. Arnica montana is a plant-based therapy that has some potential in topical use for pain relief, with one study finding a slight benefit for arthritis of the hands. Topical use of capsaicin cream, made from chili peppers, has shown potential as well, specifically for arthritis of the knee. Other natural remedies and supplements, such as fish oil, are touted for arthritis, but their use has not been well studied.

As for exercises, I would recommend physical therapy to increase your range of motion for your shoulder and to help increase your muscular strength. Yoga, Pilates and tai chi can also be beneficial, potentially increasing your range of motion without undue stress on your already aching joints. Over time, you may well see a difference in your ability to function with less pain.

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Pain in YOUR bones? Don’t mistake cancer symptoms for common arthritis or gout – Express.co.uk

Friday, March 10th, 2017

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Bone cancer is a rare type of cancer - it affects just over 500 people every year.

Most cases of bone cancer develop in the long bones of the legs or upper arms.

The most common symptoms of the disease is a persistent pain which gets worse over time, and like arthritis can get worse at night.

NHS Choices said: The pain can sometimes be wrongly mistaken for arthritis in adults and growing pains in children and teenagers.

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We know that too often people ignore pain or swelling in their joints.

Alan Silman

Other symptoms of bone cancer can include swelling and redness over a bone which can make movement challenging.

This could also be mistaken for gout, an uncomfortable, inflammatory condition that occurs when needle-like crystals of uric acid form within certain joints or soft tissues.

Gout - which is a form of arthritis - can be associated with a rich diet which can be altered to avoid the condition.

Other symptoms of bones cancer include a lump over a bone, or a weak bone which fracture more easily than normal.

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Leukaemia 31% - This cancer of the blood is the most common type of childhood cancer

We know that too often people ignore pain or swelling in their joints.

Alan Silman

This could be mistaken for osteoporosis - a condition which weakens bones and makes them more fragile and likely to break,

The condition affects more than three million people in the UK.

There are three main types of bone cancer including osteosarcoma which most commonly affect children and young adults under 20 and Ewing sarcoma and chondrosarcoma.

The Bone Cancer Research Trust (BCRT) has previously called for faster x-ray referrals for children or young adults who visit their doctor with painful bones or swollen joints, after a report by the National Cancer Intelligence Network (NCIN) revealed that survival rates for primary bone cancer have remained unchanged.

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Experts have said X-rays can have a huge impact on sufferers chances of survival, adding that there is a need to improve GPs awareness of primary bones cancer.

Professor Alan Silman, former medical director of Arthritis Research UK has previously spoken out about the symptoms of bone cancer.

"We know that too often people ignore pain or swelling in their joints.

"Often these symptoms are the early signs of rheumatoid and osteoarthritis.

"Very rarely a localised pain and swelling without any other obvious cause can be warning signs of bone cancer."

Macmillan Cancer Support said another signs of the disease could be difficulty moving a joint.

It said: If the cancer is near a joint, this can make it more difficult to move the joint.

It can affect the movement of the whole limb. If the affected bone is in the leg, it may cause a limp. If the tumour is in the spine, it may press on nerves, causing weakness or numbness and tingling in the limbs.

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Arthritis New Zealand South Canterbury office to close – Timaru Herald

Friday, March 10th, 2017

ESTHER ASHBY-COVENTRY

Last updated15:00, March 10 2017

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Arthritis sufferers in South Canterbury will only be able to contact Arthritis New Zealand via online or telephone from the end of March when its office in Timaru closes.

Another not for profit organisation is closing its office doors in Timaru, this time Arthritis New Zealand South Canterbury will shut at the end of March so funds saved can be redirected.

Diabetes South Canterbury closed its Timaru office at the end of 2016.

March 31 will be the final day the Arthritis New Zealand South Canterbury office located at Community House will be open.

Nationally there are 620,000 adults suffering from arthritis and 1000 children. The condition causes joint pain, swelling, stiffness and decreased mobility. There are more than 100 types of arthritis.

Arthritis NZ chief executive Sandra Kirby said the organisation had signalled as early as 2011 that it would take up the the three office model, Auckland, Wellington and Christchurch, closing its six regional offices.

"We did our best to retain experienced staff for as long as we could. Some (regional offices) closed before Christmas and the last local office will close in June."

Kirby said eight, part time staff members, had taken redundancy and in some cases that was voluntary. Thirty staff members would be left.

The closures would save about $300,000 annually which would be spent on more awareness and advocacy work. The board's decision for the redirection strategy was based on a review, consultations and feedback "on where energy needs to go".

"We are incredibly conscious and fortunate the community supports us. We are a charity and need to use the money wisely and be more cost effecitve."

Arthritis NZ needs $3.5million a year to function averaging $10,000 a day. Last financial year it ended with a deficit of $536,000 while the year before that had a surplus of $580,000.

She said the changes were a "strategic redirection" of funds with everything the offices offered available online and via telephone, except face-to-face interactions. In 2016 the organisation received 10,000 phone calls.

"We offer comprehensive support for people to self manage their chronic condition."

The organisation had dropped the physical support groups it ran but would link callers to other appropriate services already in their communities.

"A lot of people of all ages use online (services)."

Arthritis NZ's 0800 phone line was available during business hours with no plans to expand the service in the immediate future, Kirby said.

South Canterbury arthritis educator Vanessa Stone could not be contacted for comment.

-Stuff

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New procedure helps people dealing with severe arthritis – WNDU-TV

Friday, March 10th, 2017

For people with severe arthritis in their toe joints, surgery has been one of the only options to relieve chronic pain, and fusion is a last resort.

Logan Snyder was a standout high school athlete, racking up awards and landing a college softball scholarship, but pain in her toes became unbearable.

"Anytime that I would put weight on my toes, when they would bend back is when it would hurt, which is pretty much constantly," said Snyder.

Doctors performed multiple surgeries to relieve pressure from whats called Hallux Rigidis, a rigid big toe.

"We see it a lot in people who are on the front of their toes, whether its dance, whether its gymnastics, whether its running," said Dr. Victor Prisk, an orthopedic surgeon at Allegheny Health Network.

Foot and ankle surgeon victor prisk knew that fusing the joint would eliminate the pain, but would also limit motion. Instead he recommended a newly-approved flexible toe joint implant called cartiva.

"Its made up of a material called polyvinyl alcohol. Its very similar to the material that would be used to make contact lenses," said Dr. Prisk.

Doctors open up the top of the toe exposing the head of the joint, and then they insert the implant.

"It almost acts like a bumper in your joint. Just like your cartilage would," said Dr. Prisk.

Logan felt the difference as soon as she started moving her big toe.

The change is that I can feel how far back it can get. Its crazy compared to other surgeries," she said.

Last year pain forced Logan to quit softball, but now shes working to get back in shape without pain.

"Thats what Im aiming for, and I really hope to get there," said Logan.

The FDA approved Cartiva last July. Doctor Prisk says its recommended for patients who do not have gout and dont have severe toe deformities.

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Arthritis Cases Surge – AARP News

Thursday, March 9th, 2017

Not only has the total number of diagnosed cases risen, but those who say arthritis has severely limited their activities has jumped 20 percent since 2002, to 24 million.

Arthritis is a painful, inflammatory condition of the joints that makes simple tasks like holding a cup, walking to a car or lifting a bag of groceries virtually impossible. It includes osteoarthritis, the most common form, as well as rheumatoid arthritis, gout, lupus and fibromyalgia.

The CDCs analysis of recent federal health data also found that women are more likely to have arthritis than men, and so are those who are obese or who have heart disease or diabetes. About 49 percent of people with heart disease and 47 percent of those with diabetes have been diagnosed with arthritis, along with about a third of adults who are obese.

Despite the pain and stiffness that arthritis causes, the report suggests that many people could reduce these symptoms by 40 percent with regular physical activity, which helps keep joints from stiffening. Currently, 1 in 3 adults with arthritis report being inactive.

This phrase says it all: Rest is rust, motion is lotion, Schuchat said. Even though those with arthritis may be reluctant to try exercise because of their painful joints, studies have shown that being physically active helps lubricate the joints, easing pain and improving movement.

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Ask the Drs.: Natural remedies for arthritis pain – The Salinas Californian

Thursday, March 9th, 2017

ASK THE DOCTORS by Robert Ashley, M.D. For The Salinas Californian 9:01 p.m. PT March 8, 2017

Dr. Robert Ashley MD(Photo: Provided)

Dear Doctor: Are there natural remedies for arthritis? Exercises that could help? My pain is in the upper arms and shoulders.

Dear Reader: Osteoarthritis, the kind that youre describing, is caused by degeneration of the cartilage within a joint. Without the cartilage, one bone rubs upon the other, leading to pain and degeneration of the bone.

Doctors typically recommend nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, naproxen and aspirin; acetaminophen; and, more rarely, opiates. But NSAIDs can increase the risk of stomach ulcers and kidney problems when used chronically; acetaminophen at high doses can cause liver problems when used chronically; and opiate medications can lead to addiction. So I can understand your desire to look for an alternative for the pain.

The supplements chondroitin sulfate and glucosamine have been used for osteoarthritis for years. Chondroitin is one of the building blocks of cartilage in our body, so many people naturally believe that taking chondroitin can decrease the pain of arthritis.

A 2015 review of 43 randomized trials compared the use of chondroitin alone or in combination with glucosamine against the use of a placebo. Most of these studies looked at treatment for arthritis of the knees, with some looking at arthritis of the hips and hands. The studies measured pain on a 100-point scale. The use of chondroitin was found to be beneficial, whether with or without glucosamine, showing a small 8-point difference in pain compared with placebo. It didnt ease the stiffness and lack of mobility associated with arthritis, however.

In another study, a randomized trial of 606 patients with pain from osteoarthritis of the knee compared the use of glucosamine with chondroitin against the anti-inflammatory drug celecoxib (Celebrex). After six months, both groups found a greater than 50 percent reduction in both pain and joint swelling. What was interesting about the study was that it took a while for the glucosamine/chondroitin to work. At one to four months, Celebrex was much better at improving pain, but at six months it was no different than the glucosamine/chondroitin combination. So with the use of glucosamine and chondroitin, it is important to be patient.

The supplements MSM (methylsulfonylmethane) and DMSO (dimethyl sulfoxide) are anti-inflammatory agents that have been studied in arthritis of the knees without evidence of benefit, but its possible they could decrease pain in the joints of the hands. Arnica montana is a plant-based therapy that has some potential in topical use for pain relief, with one study finding a slight benefit for arthritis of the hands. Topical use of capsaicin cream, made from chili peppers, has shown potential as well, specifically for arthritis of the knee. Other natural remedies and supplements, such as fish oil, are touted for arthritis, but their use has not been well studied.

As for exercises, I would recommend physical therapy to increase your range of motion for your shoulder and to help increase your muscular strength. Yoga, Pilates and tai chi can also be beneficial, potentially increasing your range of motion without undue stress on your already aching joints. Over time, you may well see a difference in your ability to function with less pain.

Robert Ashley, M.D., is an internist and assistant professor of medicine at the University of California, Los Angeles.

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Diagnosed with arthritis in middle school, CU’s Jesse Knori managed to become a successful athlete – The Denver Post

Thursday, March 9th, 2017

BOULDER For someone who spent much of her childhood unable to see her kneecaps because of joint swelling caused by rheumatoid arthritis, Jesse Knori has enjoyed a remarkable career as an athlete.

Knori, a senior nordic racer for the Colorado ski team, will retire after racing at the NCAA championships this week in New Hampshire because it wouldnt be good for her damaged joints to continue training at the levels her sport demands. She will be missed, not only because of her talent but also for the inspiration she provided to teammates for her ability to cope with pain and family tragedy.

Sometimes after a race she has to be carried from the finish line because she loses feeling in her legs.

I can feel that somethings wrong, but theres no spatial awareness of where my feet are, Knori said. Thankfully I have a really strong team. They can carry me.

Despite her arthritis she was an All-American last year, she won a race at the Alaska Anchorage Invitational this season, and she represented her country at the Under-23 nordic world championships last month, finishing 15th in a sprint race.

Her career has been one of overcoming obstacles. Knori was unable to compete her freshman season because of a long bout with whooping cough. Then she lost her father in a horseback-riding accident.

Without complaining at all, she has such dedication and perseverance, said CU nordic coach Bruce Cranmer. Knowing how much shes had to deal with, and been so positive, its an inspiration for everybody on the team.

The first signs of her disease showed up in the sixth and seventh grades. Knori started noticing she couldnt turn her neck without getting an electric pain in her spine. Then her knees began to swell.

I didnt know what my kneecaps looked like until I was probably 18, when I started seeing them again, Knori said. They were like giant grapefruits.

Knori had togive up volleyball and figure skating, which she loved. She could swim, and was on her high school team, but she longed to be outdoors. Growing up on a ranch in Jackson, Wyo., there was a lot out there to miss, so she gave cross country skiing a try and fell in love with it. It may not have been good for her joints, but it was great for her mental health.

When youre happier, your body tends to be healthier, Knori said, and I was having a great time.

She was good at it, too. After moving to Sun Valley, Idaho, she won a state high school title. She made it to junior nationals three times before enrolling at CU in 2013. There she had another major setback.

An injection that was supposed to control inflammation in her joints crashed her immune system, and within days she had whooping cough that lasted seven months. She kept going to class, but professors asked if was prudent for her to be out in public.

I would faint and puke just from coughing, she recalled. Every four weeks or so, I would have a good day. I think I trained like eight hours in six months. I just had to keep my mind positive and get ready for it to be over.

She did not consider quitting.

To me it was just, stuff happens and you get on with it, Knori said. I just loved the sport.

She joked that coughing is a good workout for abdominal muscles.But the blow that came in June after her freshman year wasnt something she could laugh off. One evening back in Jackson, her father went out for a horseback ride and his horse returned without him. Search-and-rescue was summoned.

Helen H. Richardson, The Denver Post

They found him, he was brain dead on scene, Knori said. They transported him to an intensive care hospital and he passed away 12 hours after that. He hit his head on a rock.

At first, Knori wasnt sure if she could return to school, but at home there were constant reminders of her father. She went back to Boulder, grief-stricken.

I would break down (while) training, especially when we were doing really hard workouts, she said. Your mind is always challenging you when youre pushing really hard. When I would get into the red zone of training, I would break down in tears.

College ski teams spend enormous amounts of time together. There are three-hour roller-ski workouts in the summer and long van rides during the season seven hours to the Utah Invitational, 10 hours to Montana State. Her teammates were there for her.

It helped me so much more than I think any of them know, Knori said.

The camaraderie of nordic athletes goes beyond team.

When you cross the finish line, you see everyone from different teams congratulating each other and hugging each other because you all know youre doing the most masochistic sport out there, Knori said. You have to admire each and every person for doing that to themselves and loving it. Its not like they hate it. They love every second of it.

Knori is going to miss it. Being a casual recreational skier will have to suffice.

Its not smart for me, body-wise, to push it and see what I can do, Knori said. I just think I need to take care of my body a little bit more than I have for the past four years. I think Ive accomplished with skiing what I want. I still love it every day. Ill always do it. Ill be the crazy person roller skiing at age 50 because I think roller skiing is one of the more fun things anyone can do.

She wants to coach at the youth or high school level, and if one of her athletes has to go through something really difficult, she can share what battling arthritis has taught her: How she kept a positive attitude, because when she was diagnosed, she saw kids who were worse off, kids she knew would be bedridden for the rest of their lives.

Even if you are having a bad situation, Knori said, thinking positively about everything else you have in your life brings you to better places mentally than it would if you let it hold you down.

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Obesity sparking a RISE in agonising arthritis among younger people – Express.co.uk

Thursday, March 9th, 2017

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A study of four generations born between the 1930s and 1960s found rates of the agonising condition soared in each succeeding one.

The number of cases increased over time, especially among those who were carrying too many pounds. Women were most at risk.

In the UK, 10 million people now suffer from arthritis with 8.5 million of these with the most common form osteoarthritis - which is caused by wear and tear on joints where the cartilage is worn away.

Now, in the first study of its kind, researchers found more recent generations are most at risk, with increasing BMI (body mass index) to blame.

Scientists looked at 8,817 participants from the Canadian longitudinal National Population health Survey 1994 -2011 who were split into four birth groups

These included World War II (1935-44), older and younger baby boomers from the surge of births that followed (1945-54 and 1955-64) and Generation X (1965-74), born after the baby boomers.

The findings published in Arthritis Care & Research show members of Generation X are most likely to suffer the sore, creaky joints of arthritis, the ultimate badge of ageing.

Lead author Dr Elizabeth Badley, of the University of Toronto, explained arthritis rates rose over the period, especially in obese individuals.

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Within each birth cohort the proportion reporting arthritis increased

Dr Elizabeth Badley

She said: "Overall increases due to obesity were partially offset by concurrent increases in education, income and smoking cessation."

But she believes the impact of BMI on arthritis is "likely an underestimate."

Dr Badley warned: "Cohort differences focus attention on the need to target arthritis management education to young and middle aged adults."

There were 1,598 participants in the World War II cohort, 2,208 and 2,781 in the older and younger baby boomer respectively, and 2,230 in the 'Gen Xers'.

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Dr Badley said: "Within each birth cohort the proportion reporting arthritis increased over the 18 years from 1994/95 to 2010/11."

She added: "Obesity and sedentary lifestyle also increased substantially across all cohorts over time."

Women were more likely to report arthritis than men.

Higher education and income protected against it, with BMI and smoking the significant behavioural factors that caused it.

Dr Badley said: "The odds of reporting arthritis increased with increasing levels of BMI. For example, those who were in the severe obese category were 2.5 times more likely to report arthritis than those of normal weight.

"Furthermore, non smokers were less likely to report arthritis than current smokers."

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She added that increases in BMI have to some extent been offset by the positive impact of improvements in education and income levels and decreases in smoking rates.

She said few studies have considered the possibility of people born at different times having greater prevalence of arthritis.

Dr Badley said: "Our overall finding of a cohort effect so that at the same age individuals in recent cohorts are more likely to report arthritis than those of the same age several years earlier would imply an increase in the prevalence of arthritis.

"Although this population-based study asked about arthritis in general, it is likely that the overall findings reflect osteoarthritis given the overwhelmingly higher prevalence of this type of arthritis.

"Our results are compatible with studies showing an increasing incidence in osteoarthritis over time based on data on visits to doctors."

Later parenthood may also be a factor in the higher rates of arthritis in recent generations.

Dr Badley said: "The age at which women have their children has increased dramatically resulting in a greater age difference between parents and children in more recent cohorts.

"Older parents are more likely to have arthritis, potentially increasing awareness in their children."

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There has also been an increase in leisure time physical activity over time in Canada.

The higher prevalence of arthritis in more recent cohorts could be related to exercise increasing awareness of joint symptoms, or injury bringing on osteoarthritis.

Added Dr Badley: "Not only was the cohort effect of higher arthritis prevalence more marked in those who were obese compared to those of normal weight, in all cohorts the age of onset of arthritis in obese individuals was earlier.

"This has implications for the targeting of public health messages for the control and management of arthritis."

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Rosemount girl is Arthritis Foundation’s 2017 Youth Honoree – Rosemount Town Pages

Thursday, March 9th, 2017

The Walk to Cure Juvenile Arthritis raises funds and awareness for juvenile arthritis, which, according to the Arthritis Foundation, affects more children than juvenile diabetes, cystic fibrosis and muscular dystrophy combined. Nearly 300,000 American children suffer from the autoimmune disorder, which causes inflammation of the joints, swelling, pain, stiffness and loss of motion.

In Kenley's case, it was impeding her ability to learn to walk.

"She was 14 months old and she was really tentative with her walking," her mother, Dongi Huss, said. "She would walk and fall and cry, take a couple more steps, then fall and cry again. I knew there was something wrong, but I had no idea what was going on."

Kenley was officially diagnosed with oligoarticular juvenile idiopathic arthritis at 16 months old. She began receiving steroid injections in her joints to help prevent any long-term damage while doctors tried to determine which medication would work best for her. Now 7 years old, Kenley has been on medication almost continuously since that time.

Huss said the drugs have helped keep her daughter's symptoms under control.

"It's not something you want your kids to be on long-term, but it helps," she said. "You have to try to find that balance between medication and quality of life long-term."

Huss said Kenley's symptoms are not severe enough that she requires more invasive IV treatments like some kids so. Other than having to visit a rheumatologuist and an eye doctor and have her blood drawn several times a year, she leads a fairly normal life. She is even active in baton twirling and dance.

"She's like any other kid," Huss said." As long as her medication is working, she does everything her friends do."

On Friday, Kenley conducted a live interview on WCCO "This Morning" to help provide awareness for her condition. And Saturday she got to share her story with 2,000 people at the The Walk to Cure Juvenile Arthritis kickoff celebration at the Mall of America.

"She read her speech and she was so amazing, and then I cried" Huss said.

After the pre-event festivities, which included face painting, hair painting and entertainment, Kenley's team of supporters walked several laps around the Mall of America to help raise awareness. This year, Kenley's Krew raised more than $12,500 to help fund research on juvenile arthritis in hopes of identifying better treatments and a cure.

"We had over 75 people walking with us, cheering us on, and clapping and screaming and jumping up and down," Huss said. "It was an amazing experience. It really was."

Kenley said she thought it was important to make more people aware of her juvenile arthritis. She also enjoyed her little brush with fame.

"I really liked being on TV so my friends could watch," she said.

Huss said the Arthritis Foundation has done an amazing job of advocating for kids with juvenile arthritis, and she was grateful for the opportunity to connect with others who are dealing with the same condition.

"For us, it's just so important to raise awareness because we had no idea this even existed until we got Kenley's diagnosis," Huss said. "There are almost 300,000 kids who have this, and we had no idea. It's important for people to know there are a lot of super tough kids out there that are battling and dealing with this. The more I get the word out, the more available we are to other families that might be dealing with this, and they will know they are not alone."

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