Setting Our Sights on Better Quality of Life
Welcome to the third and final year of our Join Our Journey campaign! In the past two years, we shined a light on the importance of earlier diagnosis and better treatments. Now, we’ve set our sights on a new milestone: better quality of life for those affected by vasculitis.
In this year, when the pandemic has created challenges for so many, celebrations give us something to look forward to. There is much to celebrate in the vasculitis community, as researchers hone in on new and more effective treatments that will improve lives. But we need funding to continue the progress.
Please read our 2020 Annual Appeal Letter, and Join Our Journey. Help us give people with vasculitis something to celebrate: a better quality of life!
Our Incredible Patient Profiles
Support Systems and Resources are Key to Coping with Chronic Disease
“You have to be able to tell your story to those who ask. Not an easy road, but one we can all walk.”
Educate Yourself and Find an Experienced Doctor you can Trust
“We need to find a new normal, but also don’t settle.” He urges people to listen to their body and push it at the same time.
Enjoying Life in Remission from MPA and Pursuing Her Passions
“I know in my heart, that my life is limited. I will not live as long as I want to, but I intend to travel everywhere and then share what I’ve learned.”
Jody Marten: Support System and Resources are Key to Coping with Chronic Disease
Patients with vasculitis often find that having a support system and resources to tap into can help them cope with a chronic disease. Jody Marten, who was diagnosed with Takayasu’s arteritis (TAK) and giant cell arteritis (GCA) in 2014, is grateful for the family and friends who are by her side on her vasculitis journey.
TAK affects the aorta and its main branches that carry blood from the heart to the rest of the body. GCA typically affects the arteries in the neck and scalp, especially the temples. It can also affect the aorta and its large branches to the head, arms, and legs. Jody was also diagnosed with breast cancer 20 years ago. In 2018, she was diagnosed with polymyalgia rheumatica (PMR), an inflammatory disease causing stiffness in joints, and is sometimes associated with GCA. Jody underwent hip replacement and hip reconstructive surgery in the fall of 2018.
Before being diagnosed with vasculitis, Jody’s symptoms included dizziness and several instances where her doctors couldn’t find a pulse or a blood pressure reading. She also experienced several episodes of numbness in her arm. Sometimes when her blood pressure was low, she went to the emergency room (ER) for fluid support, but was always released. Then one evening she had gastrointestinal bleeding, was sent to the ER, and was admitted to the hospital.
Although Jody previously had an electrocardiogram, her doctors ordered more testing. She was initially diagnosed with thoracic outlet syndrome, a group of disorders that occur when blood vessels or nerves in the space between the collarbone and first rib (thoracic outlet) are compressed. Jody spent four months attempting to get an accurate diagnosis. She waited another month to see a specialist. The results of her angiogram confirmed TAK and GCA.
Initially, Jody’s treatment included prednisone and methotrexate taken once a week. Now, she’s only taking a low dose of prednisone. She sees a rheumatologist twice a year to have blood drawn and an ophthalmologist once a year for a full exam. Fortunately, the GCA hasn’t affected her eyes.
Before her diagnosis, Jody was very active. She played tennis and golf, taught young children to play those sports, ran a small private law practice in Washington, D.C., and rented out her basement to college graduates and interns. Since her diagnosis, Jody has had to limit many of her more vigorous activities. “I think the vasculitis diagnosis made me more hesitant to go to events and be more social,” she said. “I also believe the GCA, PMR, and medication increased my fatigue.” She also said recent hip surgeries have slowed her progress in recovering her activity level. Knowing she’s likely in a high-risk category if she were to contract COVID-19, Jody has also been vigilant since March about ensuring any of her outside activities follow the Centers for Disease Control and Prevention guidelines for minimizing the spread of the virus.
For others facing life with vasculitis, Jody says it’s important to seek out the support of family and friends. She believes in using all the resources available, including the Vasculitis Foundation. “There are so many people out there willing to help,” she said.
Jody also recommends researching your disease, seeking counseling, and participating in clinical trials, as she has done. She said, “Being in a research clinical trial at the National Institutes of Health has enabled me to gain knowledge about the latest treatments for my condition.” She also noted, “It’s also necessary to educate your family and friends about vasculitis. You have to be able to tell your story to those who ask. Not an easy road, but one we can all walk.”
PAN Patient Roy Chao Says Educate Yourself and Find an Experienced Doctor you can Trust
There were nights in the past when Roy Chao went to sleep and felt so bad that he didn’t know if he would wake up the next morning. Today, 52-year-old Roy says it’s important to appreciate every morning because you never know if this is the day your life will change forever.
In 2014, Roy was diagnosed with polyarteritis nodosa (PAN), a form of vasculitis which causes inflammation of the blood vessels that supply the nervous system, joints, skin, kidneys, gastrointestinal tract, and heart, among other organs.
Before his diagnosis, Roy couldn’t hold his arms up long enough to wash his hair. He had testicular pain, a bout of uveitis (eye inflammation), and an overall weakening and fatigue in his arms and legs. “My early symptoms weren’t severe enough to suggest something was really wrong,” Roy said. “Once I flared, I had to be hospitalized and it took about a week to get diagnosed.”
At the time of his diagnosis, Roy was immediately put on prednisone (for a year) and other immunosuppressants (for 4 years), but is not taking any medication now.
To help manage his disease, Roy finds it more productive to be positive rather than negative. “Up until this last winter when I developed a medical condition unrelated to PAN, I still played ice hockey, skied, and was starting to play golf again,” Roy said. “Now with COVID-19, I go on a lot of walks/hikes, and just got clearance from my doctor to play golf again. I still hope and plan on resuming hockey and skiing.” Roy currently lives in Saratoga, California, is married, and has three boys.
When asked for his advice for others facing a similar diagnosis, Roy said, “We need to find a new normal, but also don’t settle.” He urges people to listen to their body and push it at the same time. “Educate yourself on what you’re dealing with and find an experienced doctor you can trust.”
Roy sought out the VF to learn as much as he could about PAN and vasculitis in general. He wanted to know what he was dealing with, the prognosis, his treatment options, and to connect with people coping with the same disease.
“No matter how down or crappy you might be feeling, don’t give up. Things will get better,” he said.
In 2015, the VF talked to Roy about his diagnosis and how he stays active, as part of the video series, Extraordinary Vasculitis Stories. Watch it here: www.youtube.com/watch?v=Zxqx2XHVYPM&feature=youtu.be.
Kathy Olevsky: Enjoying Life in Remission from MPA and Pursuing Her Passions
After Kathy Olevsky was diagnosed with ANCA-associated microscopic polyangiitis (MPA) in 2009, it took her about a year to realize that she would never be the same person she was before she became sick. But when you read her story, you’ll see that this determined 62-year-old is not only surviving, she’s thriving.
Kathy was a physically strong woman prior to developing vasculitis. She was an athlete and started training in martial arts right after college. The Raleigh, North Carolina, resident earned an eighth-degree black belt in karate, and she and her husband, Rob, had at one time owned five martial arts studios. The couple has two children, a 35-year-old son and a 27-year-old daughter.
While practicing karate, Kathy also taught and mentored other martial arts school owners. “I had loads of energy and worked 60 hours a week with no regrets,” Kathy said. But in the year before she was diagnosed, her health changed. She started having aches and pains at age 50. “But what pushed me over the edge was debilitating pain between my shoulder blades. It made me call 911 a few times.”
She was told repeatedly by specialists that she needed to learn to deal with stress better. Her primary care doctor, however, knew about the athlete and warrior living inside Kathy. “She continued to champion me,” said Kathy. “She knew me well, and if I was in her office, something was wrong.”
Kathy’s doctor sent her to 13 different specialists for testing to help determine a diagnosis. The lab work indicated that she was in kidney failure. She then went to a trusted friend who was also a nephrologist, and he diagnosed her with ANCA-associated vasculitis.
When she was first diagnosed, Kathy was admitted to the hospital at the University of North Carolina (UNC), Chapel Hill. She spent 21 days there and underwent plasmapheresis three times. She went through six years of treatment with short remissions, although she was never able to take her medications as an outpatient. She had reactions to all of them, which required in-patient treatment. She was later introduced to the biologic drug rituximab, which led to a long-term remission off treatment
in 2013. Kathy then began the slow climb back to health.
“I have never regained my strength, although I see a strength training coach twice per week and have been doing this for the last two years,” she said. “It took me four years after remission to start to understand that no matter how hard I tried, physically I was not the same person.” Kathy currently sees Ronald Falk, MD, at UNC every three months for lab work and to keep tabs on her disease.
“I miss the physical person I was before, but I’m a stronger leader than I was—even then,” she said. She has traveled and presented at conventions, and has visited places as far away as Australia to share her expertise. Once a week she teaches black belts in her organization—a group of about 130 children, teens and adults—and her role is now teaching instructors how to teach. “I’ve spent years working in an atmosphere of positive energy and great customer service. We treat everyone like family and we teach them why they need to help spread the good in the world.”
Kathy also hosts the Vasculitis Foundation’s 2020 Road to Wellness webinar series and thinks it will be the most important work that she will ever do. Visit: https://bit.ly/2HWvGTb.
“I definitely had my dark moments. I relied on friends and family to help me get through those,” Kathy said. “I know in my heart, that my life is limited. I will not live as long as I want to, but I intend to travel everywhere and then share what I’ve learned.”
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“I’m looking forward to continued wellness and continued remission. I’m hoping to relocate down south and continue to live my life to the fullest, enjoy time with my husband of 30 years, my three kids, family and friends! As my first rheumatologist said to me after my hospitalization, ‘Live your life and do what you did before.’ I carry that advice with me every day!”
Non-parenchymal Neuro-Behcet’s, 2012
“It’s definitely been a hard 9 years but I’ve achieved a lot of things in that time including going back to full time work, regaining my pre-stroke fitness levels, hiking in Patagonia and summiting Half Dome in Yosemite to name just a few. Some days I’m truly in awe of what my body can still do at the same time that it battles such a horrific disease that has taken so much from me.”
“I am currently in the process of weaning off medications, Prednisone & Imuran. I try to eat an anti-inflammatory diet to try to keep the vasculitis under control and in remission.”
“This year the focus is on longer, better quality of life and using celebrations as milestones. This year I’m celebrating 12 years of continuous remission, and 12 years living comfortably with the hip replacements that I had received in 2008.”
“I just passed my 6-year diagnosis anniversary, but am really looking forward to celebrating my 4th year of working with the VF in some capacity, which technically started in January 2017.”