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Articles This Issue
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.
Treating Pain With Medical Marijuana
Research suggests cannabis has promise for easing arthritis-related pain, inflammation and more – but some doctors caution that’s only part of the picture. Find out more.
Have Fun, Get Active, Fight Arthritis
The Walk to Cure Arthritis is right around the corner, don’t miss out! Find your local event.
Think you need to be an elite athlete to ride with us at an Arthritis Bike Classic event? Think again!
Our Friends, Our Donors
Arthritis Foundation supporters make an impact every day. Read their stories.
Add Your Voice to Our Work on Capitol Hill
Share your story and the Arthritis Foundation will present it to legislators next month. Get started.
Actress Kate Williams Grabau’s diagnosis and experiences with juvenile arthritis have fueled her craft and have taught her to appreciate everyone’s story.
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 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.
Learn about advancements in joint replacement surgical techniques and treatments.
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.
Joyce Bustinduy donates her time to the Arthritis Foundation and embraces the feel-good moments of her volunteerism.
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.
Research suggests cannabis has promise for easing arthritis-related pain, inflammation and more – but some doctors caution that’s only part of the picture.
Reprinted from Arthritis Today / By Camille Noe Pagán
“Joints for Joints.” That was the title of a lighthearted yet science-based debate at the annual scientific meeting of the American College of Rheumatology/Association of Rheumatology Health Professionals in 2011. The topic: whether medical marijuana – that is, the medicinal use of the cannabis plant – was a safe and effective arthritis treatment.
Taking the “con” view, Stuart L. Silverman, MD, attending physician at Cedars-Sinai Medical Center in Beverly Hills, Calif., argued that although some cannabis research was compelling, inconsistent dosing and quality-control issues, as well as a lack of well-controlled research, meant marijuana was not “ready for prime time,” particularly where arthritis was concerned.
Taking the “pro” position, Arthur Kavanaugh, MD, a professor of medicine at the University of California, San Diego (who declined to be interviewed for this article), argued that the type of carefully controlled trials Dr. Silverman called for had not been conducted on aspirin, either, and that cannabis – used medicinally for nearly 5,000 years – had few side effects, eased pain from rheumatoid arthritis (RA), and might reduce inflammation as well.
Drs. Silverman and Kavanaugh didn’t reach any firm conclusions, but after multiple rheumatologists in the audience revealed that many of their patients were inquiring about or already using cannabis, one thing was clear: Medical marijuana had gone mainstream.
In fact, 23 states and Washington, D.C., have legalized limited use of medical marijuana for certain conditions. (Some, including California, permit it for arthritis; others, such as New Jersey, do not.) Four states, Washington, Colorado, Alaska and Oregon, have decriminalized even its recreational use. A 2011 Journal of Pain survey revealed that almost 10 percent of Americans with chronic pain use marijuana. Although it’s unclear how many of those have arthritis, large-scale surveys from the United Kingdom and Australia indicate that roughly one-third of people who use medical marijuana do so for arthritis – and most report considerable pain relief. Additionally, a Canadian study in Arthritis Care & Research found that among 457 patients with fibromyalgia, 13 percent used cannabis to manage their disease.
How It Works
Research shows that, among other things, cannabis eases chemotherapy-induced nausea and loss of appetite, and relieves spasms in individuals with multiple sclerosis. Even so, pain relief is perhaps the most well-recognized and studied effect.
Several decades ago, scientists discovered that mammals, including humans, have a pain-regulating system (the endocannabinoid system) with receptors in nervous system tissue, immune cells and bone and joint tissue. These receptors respond to cannabinoids, a set of compounds that include endocannabinoids, which the body creates on its own; and phyto-cannabinoids, plant-based compounds found in marijuana that are very similar to endocannabinoids.
The best known cannabinoids are THC (delta-9-tetrahydrocannabinol, the psychoactive compound in cannabis) and CBD (cannabidiol, a major constituent of the plant thought to act as a sedative and reduce inflammation, nausea and convulsions). They have complex mechanisms, but in a nutshell, cannabinoids can reduce pain by acting on certain receptors.
Of the two main cannabis species – sativa and indica – sativa contains higher THC and lower CBD levels and produces a more euphoric “high.” Indica has higher CBD and lower THC levels and is used to aid sleep and ease pain.
Cannabinoids also seem to have a positive impact on some other pain medications. One study, in Clinical Pharmacology & Therapeutics in 2011, found that chronic pain patients using long-acting oxycodone or long-acting morphine who inhaled vaporized herbal cannabis experienced a significant decrease in pain – far more than with the opioids alone. Though the study was of just 21 patients, study author Donald I. Abrams, MD, professor of clinical medicine at the University of California, San Francisco, says it “suggests that cannabis has the potential to relieve pain and decrease use of opioids, which, unlike cannabis, are associated with major side effects.”
Evidence for Arthritis
Studies show cannabinoids can be somewhat effective in treating pain from arthritis and related conditions. One meta-analysis of four randomized trials published as an abstract in the Annals of the Rheumatic Diseases, found that oral cannabinoids (cannabis oil) offered minimal to moderate improvement compared with placebo in individuals with musculoskeletal pain, including RA, back pain and fibromyalgia. Study author Janet Pope, MD, professor of medicine at the University of Western Ontario in Canada, notes that the results are not generalizable to smoking marijuana, and says, “The benefit was modest, and this was only studied for short periods of time.”
A 2011 British Journal of Clinical Pharmacology review examined 18 studies of smoked, oral and/or synthetic cannabis and concluded cannabis was safe and modestly effective in neuropathic pain (chronic pain that results from damaged or dysfunctional nerve fibers), and also had the potential to help treat RA and fibromyalgia pain. Additionally, cannabis has been shown to improve sleep – and a lack of sleep is known to exacerbate general pain and arthritis symptoms.
And cannabis holds promise for osteoarthritis (OA). “Joints have a complex endocannabinoid system and are able to produce their own endocannabinoids. But in disease states, such as with osteoarthritis, these endocannabinoids are broken down too quickly, so they can’t help with joint pain,” says Jason J. McDougall, PhD, associate professor in the departments of pharmacology and anesthesia at Dalhousie University in Halifax, Nova Scotia. In ongoing animal research, McDougall and his colleagues have found that by blocking certain enzymes or injecting cannabinoids into the joint, sensitivity and pain are reduced, leading McDougall to speculate that both endocannabinoid-targeting and cannabis-based treatments may hold new hope for individuals with OA.
Cannabis also may ease inflammation and affect immunity. In-vitro and animal studies have shown that both herbal and synthetic cannabinoids have the ability to suppress inflammation. Most recently, a Biological & Pharmaceutical Bulletin study in 2011 revealed that six different cannabinoids inhibited the activity of COX-2 enzymes, which play a role in arthritis-related inflammation. Other preliminary studies suggest cannabinoids may have immunosuppressive properties – including the ability to inhibit pro-inflammatory molecules called cytokines.
Why Docs Worry
Put simply, when you use herbal cannabis – that is, you inhale or ingest the marijuana plant in some form – you can’t be sure of what you’re getting. Cannabis contains hundreds of compounds, about 60 of them with cannabinoid properties. “But every plant contains different concentrations, so [using marijuana] is not the same as taking a carefully calibrated medication,” says Mary-Ann Fitzcharles, MD, associate professor of medicine in the department of rheumatology and pain management unit at McGill University in Montreal. She is considered one of the foremost experts on the use of cannabis in arthritis and fibromyalgia. In addition, she says, “There are no well-controlled studies on humans using herbal cannabis for arthritis. The few that exist are relatively small, and long-term effects are unknown.”
If you do obtain a prescription from a physician, you get your medication not at a pharmacy, but at a marijuana collective or dispensary – where the choices can be confusing at best, says Dr. Silverman. “You have a menu offering names like Blue Kush and Green Haze, which don’t necessarily tell you which kind of marijuana – indica, sativa or hybrid – it is. And not all list the potency – for example, 13 percent THC – or have been screened for fungus or pesticides. If you’re not familiar with marijuana, how do you know how much or which kind to use?”
Dr. Silverman says that most rheumatologists are not informed or prepared to give specific advice on how to use medical marijuana, “so you’re forced to rely on the advice of the person behind the dispensary counter,” he notes.
Dr. Abrams disagrees. “I’m a cancer doctor, not a rheumatologist, but most dispensaries in California, where I live, tell you whether you’re getting indica or sativa, as well as the percent of THC it contains,” he says. “And the bottom line is, marijuana is a very safe drug. When we give patients with chronic pain a prescription for gabapentin [a drug often used as a painkiller], we say, ‘Start with one; try two or three if that doesn’t work.’ It’s the same with medical marijuana: Start low and see how it goes.”
In addition, says Dr. Abrams, “As an oncologist, I see patients who have extreme pain, depression and nausea. I feel comfortable being able to recommend one ‘medication’ – a medication they can even grow themselves, which is very empowering – with few side effects, rather than multiple prescriptions for medications with severe side effects.”
In fact, Dr. Pope’s study found that the most common side effects of oral cannabinoids were drowsiness and confusion, and marijuana is not known to have negative interactions with medications used for RA, OA or most other musculoskeletal or rheumatic diseases. However, says Dr. Fitzcharles, “My research has shown that it is associated with anxiety in individuals with fibromyalgia. And because THC concentrations are so much higher than they used to be even 10 years ago, it is a known cause of acute psychotic episodes in Canadian emergency rooms.”
THC potency now can be greater than 20 percent – 10 times higher than in the 1960s and ’70s, Dr. Silverman adds.
Even so, many medical marijuana users with chronic pain say they don’t experience the “high” recreational users do – which some experts say may be due to complications in nerve signaling. Plus, medical marijuana users can choose specific strains with low concentrations of THC, adds Dr. Abrams.
Every expert interviewed for this story expressed enthusiasm over research on cannabis and arthritis – and cautioned that the best options for most people are treatments with a proven track record.
“There’s no question that cannabinoids have the potential to have an impact on the disease,” says Dr. Fitzcharles. Even so, she adds, “I think to turn to something with very little evidence – and so much potential to have negative impact – is dangerous.”
Proven, effective treatments are already available for RA, OA and diseases like lupus, says Dr. Pope. But, she says, “We do need better treatments.”
Patients with chronic musculoskeletal pain have an unmet need for pain relief, given that existing medications, especially narcotics, have side effects that include addiction and impairment. Cannabis may come to fill the gap.
For now, however, “Medical marijuana is uncharted territory,” says Dr. Silverman. “So buyer beware.”
The Arthritis Foundation is interested in hearing your perspective on medical marijuana.
Please consider completing this brief, anonymous survey.
The Walk to Cure Arthritis is right around the corner, don’t miss out!
The Walk to Cure Arthritis is a fun and easy way to help raise funds and awareness to fight the nation’s leading cause of disability.
Through the Walk to Cure Arthritis events we are funding research to get one step closer to a cure. We are also helping the millions of individuals and families afflicted by arthritis pain. Your support is critical in winning the fight against arthritis and creating a brighter future for the over 50 million Americans affected by the disease.
The Walk to Cure Arthritis events have perks for top fundraisers and teams, family-friendly activities and the latest arthritis information. Bring your family, friends and neighbors. Walk to Cure Arthritis events are truly events not to be missed!
Together we can walk to end arthritis pain, forever.
Find Your Local Walk to Cure Arthritis:
May 16, 2015
San Francisco, CA
May 30, 2015
May 17, 2015
May 16, 2015
May 16, 2015
October 3, 2015
Think you need to be an elite athlete to ride with us at an Arthritis Bike Classic event? Think again!
People who ride in one of the Arthritis Bike Classic events may do so to support a friend or family member living with arthritis, but there are also numerous cyclists at the events who themselves have arthritis.
Many past cyclists with arthritis have seen the benefits of cycling and its improvement upon their health, wellness and arthritis symptoms. In addition, the challenge and commitment of these cyclists with arthritis often inspires others around them to contribute towards their fundraising goals.
Pete Staylor has been a cyclist at many Arthritis Bike Classic events over the past eight years. He remarked on his experience, “Thanks to modern medicine I recently underwent bilateral knee replacement surgery and I am looking forward to participating in this year’s cycling events pain free for the very first time. I am feeling like I have a new lease on life and as I begin my physical training it feels fantastic!”
The Arthritis Bike Classic events recognize that cyclists with arthritis may be challenged with fatigue, joint pain or muscle weakness. With this in mind, Arthritis Bike Classic events are designed to be fun, casual, and with plenty of support for cyclists in order to provide a comfortable environment. The Arthritis Foundation offers year-round comprehensive training for cyclists of all ability levels lead by veteran participants.
As an added benefit this year, riders with arthritis will receive a special jersey to wear that denotes them as a champion with arthritis.
Your participation and fundraising commitment includes benefits such as gourmet meals, massage, roving bike mechanics and much more.
Your participantion and registration fee includes a barbecue lunch, access to kid’s activities, and a finisher’s medal.
If you have questions about the Arthritis Bike Classic events contact Jennifer Kozicki for more information at firstname.lastname@example.org or 415.356.5483.
Arthritis Foundation supporters make an impact every day.
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.
Share your story and the Arthritis Foundation will present it to legislators next month.
Next month, more than 30 advocates from the Great West Region will take part in the 2015 Arthritis Foundation Advocacy Summit in Washington, DC! We want to take YOUR story with us and hand-deliver your letters to your legislators while in DC.
Will you take a few moments to share with your member of Congress what life with arthritis is like, and urge them to join the Arthritis Caucus? A draft letter to get you started can be accessed here.
Please include a picture of yourself, along with your full name and address so that we can match you with your member of Congress. Encourage your family and friends to write letters as well, and invite them to become an E-Advocate.
Send your letters to email@example.com by Thursday, March 12, to ensure that Congress hears from all people with arthritis on March 24!
Find your local Arthritis Foundation office to get connected.
Feedback or ideas for AFeatures future stories? E-mail firstname.lastname@example.org