Bismarck High sophomore battles juvenile rheumatoid arthritis
Erika Nitschke
Class: Sophomore
Future plans: “I plan to go to college, but I’m
not sure where or what I want to major in. My thoughts on my future
are constantly changing: art psychologist, biological
anthropologist, freelance artist, journalist, book editor,
photographer, graphic designer, and much more. There are so many
choices, it’s hard to pick just one.”
What I learned from writing this story: “Not
only did I learn a lot more about rheumatoid arthritis, but mostly
- and more importantly – I learned about who Lucas is outside of
the classrooms I see him in. He’s an intelligent and greatly
optimistic guy.”
Article source: http://www.bismarcktribune.com/lifestyles/recreation/article_ea3c0caa-3a01-11e0-aae2-001cc4c03286.html
Byron Janis and The Arthritis Foundation Announce Alliance
LEGENDARY PIANIST SUFFERING FROM ARTHRITIS, ACHIEVES LONGTIME DREAM
NEW YORK, Jan. 24, 2011 /PRNewswire/ — The legendary pianist Byron Janis, who overcame many years of suffering from psoriatic arthritis in his hands and wrists, and the Arthritis Foundation have announced that they are embarking on an alliance that will fulfill Mr. Janis’s humanitarian effort of making a difference and giving back to the 50 million Americans who suffer with arthritis. Mr. Janis will donate 25% of the proceeds from the sale of his DVD Documentary, The Byron Janis Story, his newly published book, Chopin and Beyond-My Extraordinary Life in Music and the Paranormal and his soon to be released CD, Byron Janis-Live from Leningrad. His documentary produced by Peter Rosen has aired over 850 times across the nation on PBS since its release in October and his book was released nationally in late November 2010.
“Arthritis has taught me to look inside myself for new sources of strength and creativity,” says Janis.
“It has given my life a new intensity. I have Arthritis, but it does not have me.”
As part of this alliance, Mr. Janis will do a limited number of engagements for the Arthritis Foundation for fundraising drives at national and regional galas, benefits and other programs. These performances will be infused with footage from his career as well as performing and speaking, reinforcing the message that he still performs at a high level which will inspire others to achieve. He will also participate in the July 2011 Juvenile Arthritis Conference in Washington, D.C.
For more than 38 years Mr. Janis has suffered with psoriatic arthritis; at the onset of the disease for 12 years he did not reveal he had it. Together, he and his wife Maria Cooper Janis, the daughter of late great actor Gary Cooper, continued on a journey that despite often being in severe pain, allowed him to play with only sporadic absences from the world stage. Maria has for over 40 years been at Byron’s side chronicling his performances, his challenges and his triumphs. She has been an instrumental force in bringing this story to Public Television and to the writing and publication of the book. Their life together is truly a life of international glamour, romance and triumphs in spite of his adversity.
“Byron has always lived in two worlds. He could ride the winds of music and slip over the barricades that separate how and what we experience here from other, more expanded worlds.”
- Maria Cooper Janis
Regarded as a child prodigy at 4, Mr. Janis has performed all over the world and is the only pianist to have been asked to perform at the White House for 4 sitting presidents 6 times. At the White House in 1985 Nancy Reagan announced that Mr. Janis suffered from arthritis. He has been a national spokesperson for the Arthritis Foundation ever since and the face of inspiration for millions.
“Byron Janis‘ life is an inspiration not only in the music world, but as an amazing story of overcoming incredible odds, his humanitarian efforts, his work with the Arthritis Foundation, as well as the hope he brings to those suffering with the disease has become a symbol of true conviction”.
- Deborah Neuman (Arthritis Foundation Chief External Relations Officer)
For additional information on Byron Janis and to schedule interviews, speaking engagements or public appearances please contact Bettina L. Klinger, President at KlingerVision Inc. (212) 592-1385 or email bklinger@klingervisioninc.com. For more information on Byron Janis please visit www.byronjanis.com to purchase the book and DVD and make a contribution to this humanitarian effort please visit http://www.amazon.com/gp/product/B004I3NI72.
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Article source: http://www.prnewswire.com/news-releases/byron-janis-and-the-arthritis-foundation-announce-alliance-114485509.html
Event helps those with arthritis, like Anna, 7 – Hudson Hub
by Laura Freeman | Reporter
Akron — The 14th annual Red White on Thursday Night event to benefit the Arthritis Foundation will take place Jan. 27 at 5:30 p.m. at the John S. Knight Center in Akron.
For John and Megan Faust of Hudson, the Arthritis Foundation fundraiser is personal.
Their daughter, Anna, 7, was diagnosed with juvenile rheumatoid arthritis when she was 18 months old.
In order for her to enjoy normal childhood activities, Anna receives a shot once a week, a monthly intravenous treatment with a biologic drug and blood tests every eight weeks. Anna is also closely monitored for blindness, another side effect of arthritis.
In juvenile rheumatoid arthritis, the immune system attacks the joints, causing inflammation and abnormal bone growth, Megan Faust said. The joints become swollen and painful.
In addition to taking medication, Anna undergoes physical therapy and is encouraged to be active.
Anna is one of approximately 300,000 children in America that have arthritis and related diseases, according to Mary Kudasick, president and CEO of the Arthritis Foundation, Northeastern Ohio Chapter. In Northeast Ohio 1.5 million people suffer from arthritis.
Since Anna’s diagnosis, the Fausts have looked to the Arthritis Foundation for support from other families, information about JRA and various treatment options.
The Red White on Thursday Night event on Jan. 27 will benefit the local chapter of the Arthritis Foundation. It is a strolling wine and food event that includes raffles and live and silent auctions.
Tickets are $85 in advance or $95 at the door. VIP tickets are $125 each. Tickets can be purchased by calling 800-245-2275 ext. 105 or at redandwhiteonthursdaynight.eventbrite.com.
For more information regarding the Arthritis Foundation, visit http://
northeasternohio.arthritis.org.
E-mail: lfreeman@recordpub.com
Phone: 330-688-0088 ext. 3150
Article source: http://www.hudsonhubtimes.com/news/article/4967599
Marshalltown teen suffers from arthritis
Julie Hurd sports a big smile and appears in person like any other 17-year-old.
But the Marshalltown High School senior has been dealing with physical ailments which have provided her discomfort and the inability to do simple daily tasks.
Hurd suffers from juvenile arthritis which affects several of the joints in her body.
It started with pains in her knees and has progressed throughout her body, especially occurring in her hands and jaw.
She has to take a laptop computer to Marshalltown High School as the senior can no longer grip a pen for school work. She also has trouble opening containers around the house.
“You really don’t notice how much you use your joints until you are limited,” she said.
Juvenile arthritis affects roughly 300,000 young people in the United States.
Through her issues, Hurd remains optimistic and hopes to soon be in remission with medical treatments.
She said there is a greater than 50 percent chance that remission will occur soon. But her in her mind, she looks forward to every day getting better.
“I figured out if I didn’t have an optimistic attitude it wasn’t going to get any better.” Hurd said.
Hurd is a big advocate of getting juvenile arthritis in the public eye. She has made connections with other local teens who have the disease and also is participating in an awareness walk in Des Moines in May, which is National Arthritis Month.
She wants to tell her story so those out there going through what she is going through can get the help they need.
“I just think there’s so many kids out there and there’s people who don’t know what they’re going through,” she said.
She has needed the help of her parents, Ron and Ruth Hurd, to deal with the ailment.
Her mother often is there with heating pads for her hands and other joints that are painful and swollen in the morning.
“It’s been tough,” said Ruth Hurd. “You just don’t want to think about that happening to your child, but we’ve gradually learned to deal with it.”
Her daughter has plans for college and hopes she is taking the right steps to leave arthritis behind.
“The thing we are hoping for is it gets in remission and I’ll be back to my normal self,” she said.
—
Contact Andrew Potter at 641-753-6611 or apotter@timesrepublican.com
Article source: http://www.timesrepublican.com/page/content.detail/id/536685/Marshalltown-teen-suffers-from-arthritis.html?nav=5005
Friends help boy overcome arthritis pain, social ostracism
For the AJC
Scott and Darice Jamison have a sense of how things would be if Caleb and Paul hadn’t found their son and invited him into their lives.
yosub Shin hshin@ajc.com
Zach Jamison (center), 13, and his friends Paul Guebert (left), 13, and Caleb Boerner, 14, share pizza at the Jamisons’ home in Woodstock. Zach has juvenile arthritis. He has had to deal with pain, crutches and being treated like an outcast by classmates. But in the midst of all of this, Zach has found a couple of good friends and kindred spirits in Paul and Caleb.
Hyosub Shin, hshin@ajc.com
Zach Jamison (center), 13, and his friends Paul Guebert (left), 13, and Caleb Boerner, 14, share pizza at the Jamisons’ home in Woodstock. Zach has juvenile arthritis. He has had to deal with pain, crutches and being treated like an outcast by classmates. But in the midst of all of this, Zach has found a couple of good friends and kindred spirits in Paul and Caleb.
Hyosub Shin, hshin@ajc.com
Scott Jamison (left) hugs his son Zach, who has found good friends in Paul Guebert (right) and Caleb Boerner.
Hyosub Shin hshin@ajc.com
Scott Jamison (left) hugs his son Zach, who has found good friends in Paul Guebert (right) and Caleb Boerner.
They knew their son Zach was hurting “emotionally, spiritually and physically,” Scott Jamison said. Diagnosed with juvenile arthritis, the Jamisons, of Woodstock, had seen their son on crutches for months at a time and unable to play, walk or sleep because of the pain.
Kids aren’t supposed to retire from baseball at age 8, but Zach had to.
And then classmates started making fun of him, ostracizing him on his good days, picking on him and reminding others not to befriend him on the bad days.
So here was this 12-year-old kid, physically hurting so much on most days that he described his pain level as close to a 10, a kid who had to quit sports and walk away from the activities he enjoyed most.
And then the emotional torture started.
“Socially, it was getting extremely rough,” Zach said during a break from playing video games with his two best friends on a recent Friday night.
In a way, the three seem like typical eighth- and ninth-grade boys. They hang out in a basement, eat pizza, play Wii games and challenge each other’s manhood while competing for virtual world dominance. But the weight of what these kids know creates a somber sense of maturity.
“Honestly, I don’t know if I’d be here today without them,” Zach said.
Caleb, sitting on the floor, and Paul, stretched out in an old recliner, don’t seem surprised.
“It shows what a difference one person can make on another’s life,” Caleb said.
Paul added, “It tells me that I’m glad I met him.”
As is often the case, it took nearly a year for the Jamisons to get an accurate diagnosis of juvenile arthritis. At first, they felt the disease was under control, but this is a progressive disease and things started getting worse. When Zach’s hips started hurting so badly that he could barely walk, if at all, the Jamisons tried conventional medicine. Then they sought alternative treatments. They bounced from one doctor to the next, desperate to find someone who would take on this challenge and provide some hope for relief.
As time passed, the relentless physical pain morphed from frustration to depression. Zach was losing his fight with the disease, and his parents were losing their son.
Zach’s medicine wasn’t really working, and the pain was so intense that it made him throw up for days at a time. He hated going to school because he was embarrassed by how he walked, how he had to go to the clinic so often and how, occasionally, he would vomit at school.
“Here comes ‘Crip,’ ” a kid would say.
“No, it’s ‘Chicken Legs.’ ”
And Zach thought to himself, “I can’t do this.”
“I felt embarrassed, humiliated,” he said. “And all of this is being brought on because I’m hurting and I can’t control it. And kids are laughing?”
By seventh grade, Zach had withdrawn socially. His body was a wreck. His spirit was beaten, and his hope for something better was about gone.
Kids who had been his friends since he was 4 quit talking to him because this little clique of girls, who decided who was popular and who wasn’t, didn’t think Zach was cool enough. So if they were still friends with Zach, something must have been wrong with them.
It’s heartbreaking logic that is played out in middle schools everywhere; it leads to bullying by association. Survival of the fittest was demanding that Zach lose.
“He so much wanted to fit in,” Darice Jamison said. “It’s important at that age to be accepted, and instead, he was being taunted, then would come home exhausted, in pain, and wouldn’t be able to sleep because of both.”
Scott and Darice knew their son, little by little, was dying on the inside. They prayed over him. Over and over, they pleaded: “God, please give him relief; give us wisdom; lead us to a doctor who can help; restore our hope.”
Never giving up, Scott and Darice finally found hope and some answers. Zach found hope and a reason to live. Medically, the answers were in Baltimore, where, eight months ago, a doctor was willing to do arthroscopic surgery on Zach’s hips when no one else would. Emotionally, they found hope in Bridgepointe Church’s youth group. It was a fairly small group with only a handful of 12- and 13-year-old boys. There was a kid named Paul Guebert who went to school at E.T. Booth Middle School. And a King’s Academy student named Caleb Boerner. Zach, who went to American Heritage Academy, had found a couple of kindred spirits.
“We thought Zach was pretty cool,” Caleb said. “Besides, there weren’t a lot of kids there to hang out with who were our age.”
‘Amazingly different’
If that wasn’t a ringing endorsement, it soon would be. To Caleb and Paul, it just seems normal to see each other on Wednesdays and Sundays at church and then hang out at the Jamisons’ house a couple of weekends a month.
“When Caleb comes over, he always asks what Zach feels like doing,” Darice said. “Caleb accommodates him whether that is what Caleb really wants to do.
“And knowing that Zach has a lot of difficulty sleeping and uses a special mattress, Paul always asks where Zach would be more comfortable — sleeping over at our house or if he feels well enough to sleep at Paul’s. Paul has given up his bed for Zach so Zach would be comfortable, and Paul slept on the floor,” Darice added.
In a sense, Paul and Caleb don’t see the big deal. They get how low Zach had been, and they understand that he needed rescuing. Thinking of others first, putting a friend’s needs ahead of their own, that’s just who these boys are.
“I put myself in a mind-set to do what he wants to do when we hang out,” Paul said. “No big deal.”
Zach’s parents know how rare that sentiment is — particularly in 13- and 14-year-old boys. “These kids prayed regularly for Zach,” Darice said. “These kids have heart, and they are servant leaders.”
During these cold months, Zach hurts a little more than he did during the summer. Sometimes, students still pick on him, and it stings a little. But he’s not the same kid he was just a year ago. Bad days are fours or fives now, “not 13s on a scale of one to 10,” Zach said. And for the most part, he is self-confident again and knows he has friends to hang out with.
Even things at his school have gotten better. The former friends who turned their back on him are mostly back on his side now.
“It’s amazingly different now,” Zach said. “I still can’t do sports, but I’m the manager of the cross country team now, and that has allowed me to really connect with friends.”
Darice added, “We’ve got our Zach back.”
Article source: http://www.ajc.com/news/friends-help-boy-overcome-805315.html