Juvenile Arthritis

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Becoming the Protagonist
Actress Kate Williams Grabau’s diagnosis and experiences with juvenile arthritis have fueled her craft and have taught her to appreciate everyone’s story. Discover more.

Tomorrow’s Joint Replacement Surgeries
Learn more about advancements in joint replacement surgical techniques and treatments.

Why I Volunteer
Joyce Bustinduy donates her time to the Arthritis Foundation and embraces the feel-good moments of her volunteerism. Learn more.

Our Friends, Our Donors
Arthritis Foundation supporters make an impact every day. Read their stories.

Get Connected

 


 

Becoming the Protagonist

Actress Kate Williams Grabau’s diagnosis and experiences with juvenile arthritis have fueled her craft and have taught her to appreciate everyone’s story.  

Grabau

Name:  Kate Williams Grabau

What is the story of your diagnosis?
 
I was such a healthy kid. I grew up in the country climbing trees, getting covered in mud, catching frogs, or getting everyone in the neighborhood together to act out these epic adventures. 
I was the kid who waited for the last possible second to come in for dinner, smudged with dirt, and out of breath from the run home. I remember the exact day when that changed. It was September and we'd only been back in school for a few weeks. I went straight to my friend’s house to play, but I just couldn't. They started climbing one of our favorite trees and I felt like my life force had just been drained, like the malaise of a bad flu. So I just turned around and went back home. This was a HUGE red flag for my mother. A month later, around my eleventh birthday, I had no appetite and I had dropped to about 40 pounds. I had a painful scaly rash all over my joints and even on my face. I was so weak I couldn't buckle my own seat belt. And I was in so much pain my mother couldn't hold my hand or give me a hug. The doctors in my hometown had NO idea what was going on. One day they said it was growing pains, or maybe mono since I had a fever. Then it was possibly eczema or the flu. Finally we went this one dermatologist who was so old his office looked like a set from Mad Men. He took one look at me and said, "I knew I'd see this one day" and he went into the next room to get a physician’s desk reference. He opened it to a page on "dermatomyositis," and I could see the weight lifted from my mother’s soul - just knowing this "thing" had a name.


What have been some of your challenges since you were diagnosed?
 
It took a solid five months to even finalize the diagnosis. My hometown doctor sent me to the Children's Hospital of Philadelphia, but juvenile dermatomyositis (JDMS) is a very rare disease, and my body has never wanted to follow the normal path. It took countless tests, scans, and skin samples until they finally had to resort to a surgical muscle biopsy. When I went into the hospital for my first treatment, the doctors wanted to enroll me in a national registry for dermatomyositis. I was number four… only the fourth person in the entire country to be catalogued, so clearly the treatments weren't very advanced. They could basically give you massive doses of steroids and some non-steroidal anti-inflammatory medicines. I gained 50 pounds almost immediately, going from an emaciated sickly little girl to downright chubby. And this was middle school, and middle school girls can be ruthless. I was bullied for my weight, and my appearance - you can't explain an autoimmune rash to middle schoolers - and for simple things like sitting out in gym. Thankfully I did go into remission for a little while, but then I was also diagnosed with juvenile rheumatoid arthritis in my first year in high school. That was really the beginning of the journey I'm still on today. My body has never wanted to follow the normal progression of any disease, so it took a long time to get my treatment plan right. By then enough damage had been done to my hands that I had to get two surgeries and lost a lot of dexterity, meaning I would no longer play the cello (did I mention I play the cello) as well as I had in the past. 

The biggest blow was when my dermatomyositis snuck out of remission, and through a domino effect, left me functionally mute for about a year. I thought my life was over and dreams dead. I thought I was never going to be able stand up on a stage and be heard again, let alone sing. But I'm stubborn. It took two surgeries, and years of hard work, but I have my bachelor’s degree in music and a master’s of fine arts in acting. I have to work harder than 99% of the other people out there, but I'm okay with that.
 

How did you first get connected with the Arthritis Foundation?
 
My first REAL introduction to the Arthritis Foundation was at a juvenile arthritis holiday party for families. I didn't know anybody, but it just felt great to be around people who "just got me" - who I didn't have to explain anything to - even if it was just for a few hours. My doctors and nurses encouraged me to go to a juvenile arthritis camp, but this was a long time ago and there were some people in my life who thought I would be discouraged to see other kids in pain - which I can understand.

Eight years later, I finally made a solid connection with the Arthritis Foundation and it changed my life. I was in college in Washington DC, so I decided to go to the Arthritis Foundation’s National Advocacy Summit. Suddenly my world opened up. I met people my age who were completely normal, who were living with arthritis. And they were awesome. I felt years of solitude and bitterness just melt away. I was hooked. I continued to be active in the Advocacy Summits, but I started joining the Walk to Cure Arthritis events, and then I started volunteering at the National Juvenile Arthritis (JA) Conference. I have to say that the JA Conference is my favorite event of the year. There are so many young people together there in solidarity, helping each other through the simplicity of their presence. It's beautiful. 
 

What are some of the parallels between the stage and life with arthritis?
 
The first thing that comes to my mind is that it's hard. Acting is not just memorizing lines, putting on a costume and playing pretend. It is hard, strenuous, physical work. Actors prepare for months for a role. It may look really easy while we're on stage, but as anyone with a chronic illness knows, it takes a lot of work to make something look easy.

Which feeds into the next question..."How has your diagnosis influenced your work?" It reminds me every second of every day that everybody has a story that we don't know. Every single person on the street; every person who looks perfectly fine and is parking in a handicapped spot; every character on a page has a secret. It doesn't matter if you think they are they villain or the protagonist, they have something that lies beneath. They have an untold story. I think having juvenile arthritis has given me a wonderful gift of empathy, and insight I wouldn't have otherwise. I'm hyperaware that everyone is the protagonist of their own story, even if they are the villain in yours. It's my job to tell those stories, and tell them truthfully.
 

How do you hope your work can improve the public’s awareness of arthritis?
 
It's a very strange thing to be an actor with a chronic illness, because everybody in the "industry," even friends, family, and mentors will encourage you to hide your diagnosis because you always have to be aware of your 

friends wearing blue

public face. There's the fear that if someone knows that you're "sick" you might not get the job, and to be honest there is truth to that. There have been instances where someone has told me that they just assumed I couldn't do something, and sometimes I'm lucky enough to get the chance to prove them wrong. So by "coming out" with arthritis I'm really hoping to not only change the public’s opinion, but also raise awareness in the industry of what disability can look like. To show that it can be seemingly invisible, but we know our bodies and we are more adaptable then they will ever know.
 

What are some of the lessons you have learned about being on the road and managing a chronic illness that could help others?
 
Go back to your Scout training: Always be prepared! I'm not at all "roughing it," but I did have to think about living out of two and a half suitcases for nine months. Just remember that you know your body better than anyone else, and you KNOW anything can happen. Before I took this job I asked my doctor at University of California, Los Angeles to advise me on how to manage my disease and treatment from the road, and if this was even a good idea for someone like me. Then I worked with my insurance company so I could refill my prescriptions in advance and coordinate their shipment with our different stops around the country. I touched base with my old rheumatologist on the east coast so I could check in with her in case of an emergency, and I always, always, always take care of myself. 
My rule is to assume that tomorrow could be a rough day, so take it easy on yourself today: rest, move, exercise, eat right, and don't procrastinate. Remember - anything can happen!
 

For those readers who may have hesitations about embracing a career path because of their diagnosis, what would you say to encourage them?
 
Just jump. I know it's a cliché but there are always a million reasons not to do something. But to do something that really truly makes you happy, and makes your life worth living is priceless. I can't tell you how many times I've been told by people in my life, people I know and people I don't know, teachers and mentors, that this is probably the hardest job path I could have taken. But in this path so far I have not run across one thing that I couldn't adapt or one challenge I couldn't overcome. 
Just remember that you are not defined by your diagnosis. If you choose, it can be something that makes your will stronger. But it is a choice.
 

The show continues to tour across the country in 2015, and has many stops across the Arthritis Foundation, Great West Region. What would you say about the show to rally readers to get tickets to a local performance?
 
You just can't beat it - it's live theater! We have a revamped and reimagined production of a classic musical theatre piece. The production is amazing, the cast is fabulous, and the story is timeless. Moreover, it's a story of hope beyond hope. Hope in a better tomorrow even when the possibilities of today seem limited. And, of course, it's a lot of fun! It you do stop by, be sure to tweet me @katedelores. I'd love to say "Hi."

You can see the tour schedule and buy tickets at www.camelottour.com.

 


 

Tomorrow’s Joint Replacement Surgeries

Learn about advancements in joint replacement surgical techniques and treatments. 

 

miner

AFeatures recently sat down with Todd M. Miner, M.D. (right), from Colorado Joint Replacement orthopedic center in Denver, Colorado. Dr. Miner provided us with his take on the new and trending treatments and advances for joint replacement surgeries.


In his words:

My specialty is adult reconstruction surgery specializing in hip and knee replacement and revision.
 
I’m also Board Chairman of Operation Walk Denver, our charitable organization that provides free hip and knee replacement surgery for people without access [to orthopedic surgeons] in developing countries.


What are some of the developments in joint surgery and treatment that look promising?

There have been substantial advances in joint replacement surgery recently, including improved wear characteristics of the bearing surfaces of the implants, use of 3D imaging for surgical planning and computer assisted surgery.

The potential for biological treatment options for the management of arthritis is exciting but still in experimental phase. This could involve the use of stem cell therapies, autologous cartilage cell replication and grafting.

Direct anterior hip replacement has helped speed the recovery process for many patients undergoing hip replacement surgery.

Colorado Joint Replacement is very involved in many ongoing collaborative research projects in conjunction with the University of Colorado medical center therapy department regarding functional rehabilitative efforts in patients suffering from osteoarthritis.


Find out more:

Orthopedic and joint replacement surgical and non-surgical treatments are often topics at Arthritis Foundation education events. Find the upcoming events in your area. Additionally, the Arthritis Foundation often provides informative content on this subject via www.arthritis.org

 


 

Why I Volunteer

Joyce Bustinduy donates her time to the Arthritis Foundation and embraces the feel-good moments of her volunteerism.

 

Joyce

Name: Joyce Bustinduy
Location: Fremont, CA

In her own words…

I was diagnosed with juvenile rheumatoid arthritis when I was 14 years-old.

I first became connected to the Arthritis Foundation through one of their education and self-management programs. Taking part in the program and meeting its participants was a real inspiration to me, so I started up a local group of people with arthritis to meet and discuss related issues around the impact of arthritis on our lives

Currently, I am a member of the local Arthritis Foundation leadership Board in San Francisco. I am also on the National Walk to Cure Arthritis committee, the chair of the Livermore Walk to Cure Arthritis and the event’s dog walk coordinator.

The Arthritis Foundation has helped me a lot over the years. It’s been very impactful to take part in their programs and learn from their educational materials. They have exposed me to many different facets and treatment options for arthritis.

Just because I have arthritis doesn’t mean I can’t do things. I decide each day what I have the energy to do or what requires a call for assistance.

My volunteerism with the Arthritis Foundation offers new challenges such as cycling events.  I volunteered at last year’s Arthritis Bike Classic and was inspired by all of the cyclists who participated. Ringing cow bells and cheering on the cyclists is a lot of fun.  Hearing the stories about why they ride fuels my passion to continue my efforts to help find a cure for this crummy disease. 

I’ve never had a bad experience volunteering for the Arthritis Foundation.

When I’m volunteering at the Walk to Cure Arthritis events, I love talking to people and hearing their stories – why they are there and why it’s important to them. It’s so inspiring!

The parents of children with juvenile arthritis have made a big impact on my life. These parents are so involved and so engaged with their children’s health. They are like sponges, soaking up any and all information about juvenile arthritis. They are so eager to hear other parents’ perspectives on raising a child with arthritis. Talking to the parents and interacting with the kids is wonderful, and I am often able to share my own experiences of having arthritis since I was a teenager. 

If you’re thinking about volunteering for the Arthritis Foundation, my advice is to try it. Show up. Just show up, and it may change your life. Every person can make a difference.

When you volunteer, you make things happen.  Whether you hand someone a banana at a bike event or a t-shirt at the Walk to Cure Arthritis event, you’re special and your efforts are greatly appreciated by the recipients. Volunteering instills you with a desire to want to do more and more. 

Try it once and you will be hooked.

 

 Learn more about volunteer opportunities with the Arthritis Foundation.

 


 

Our Friends, Our Donors

Arthritis Foundation supporters make an impact every day.

B and K Vander Stoep

Donor:  Brian Vander Stoep
Location:  Seattle, WA

Why I Give:
I spent my teens and twenties undiagnosed, explaining away my ailments as just part of growing up.  At age 35, arthritis cropped up yet again.  First I thought I’d simply pulled my groin. 

At the start of the flare-up that day, I was filling-in at a school event for my brother-in-law.  At the event, I had to ask my seven year-old niece to bear my weight and help me to a chair because I just couldn’t walk.  I had to watch from the sideline that day.  I’ll never forget how awful I felt that day. Later that night, my legs were just frozen. I couldn’t walk without severe pain. Two days later, the pain subsided.  Fortunately, my brilliant doctor ignored my claims of a pulled groin and sent me for blood tests. I was diagnosed with ankylosing spondylitis shortly thereafter. Since then, however, it is amazing how many friends and family members I’ve found that struggle with other forms of arthritis as well. 

I don’t know for sure that greater awareness would’ve resulted in an earlier diagnosis for me.  Research and technology have certainly made huge gains since I was a teen.  If I can do a small part to bringing greater awareness about arthritis to others, maybe that will bring us one step closer to a cure.  That is why I give.

Over the years, my wife, Kari and I (pictured top right) have both captained teams for the Seattle Jingle Bell Run/Walk. It is our fun way of creating a little competition among friends and motivating more people to join in with us. In addition, we are both active as members of the Washington Leadership Board and serve on the Bone Bash committee.  This event is so fun for us.  We invite friends and family to join us at our table, make a little money for the Arthritis Foundation and hopefully move one small step closer to a cure.  It feels very good to help a little and have a lot of fun along the way.

 


 

Get Connected

Find your local Arthritis Foundation office to get connected.

Find out about all of our volunteer opportunities on our Volunteer Resource Page or fill out a volunteer application.

Feedback or ideas for AFeatures future stories? E-mail wbalmer@arthritis.org

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