For those of you who know Jude Clarke, you know what a kind and humble person she is. She is the first to help someone if they need it and the last to ask for help. So, her friends wanted to let you know that she could really use some of our help right now.
Jude’s goal is to raise awareness about Lupus and Osteoarthritis and the ExoSym™ brace, but our goal is to raise funds for Jude! It’s very simple! So you can read her detailed story below. It explains her journey with lupus and a kidney transplant to the purchasing of the ExoSym™. We want to help this incredible person---this tough warrior, this great artist, this friend who people say this about: “I cannot recall one time we have not laughed when we are together.”
Jude has worked hard to live a full life with chronic illness and now is facing devastating immobility caused by progressive osteoarthritis. No one is stronger than Jude; we all know that. But she’s been through a lot, especially in these last three years. When you read Jude’s story, you’ll see that she found an ankle and foot device called the ExoSym™, which relieves severe pain when walking and restores mobility and the chance for a normal life.
This unexpected mobility challenge along with all the other health issues over the years have placed considerable financial strain on Jude and her husband, John Lent.
We just want to thank you first for taking the time to learn more about Lupus and the ExoSym™, and for any help you can give to this truly amazing person who is trying to return to her normal life!
Please feel free to share this with anyone you think would like to help Jude.
Here’s Jude’s Story in her own words and more information about the ExoSym™!
Kerry Gilbert, Michelle Doege, Natalie Appleton
An Introduction to Jude
My name is Jude Clarke, and I’m a visual artist, sometime writer, and gardener. I live happily with my husband John Lent and our rambunctious Welsh springer spaniel in the Okanagan Valley in British Columbia. John and I have been together for 42 years and have a wonderful life full of love, family and friends, and are lucky to be involved in many artistic pursuits, our life’s work.
I’ve found an ankle and foot device that is going to get me walking again. I’ll be able to engage in, and enjoy life, without being in severe pain each time I take a step –walking has become unbearable, impossible. As well as telling my story, I’m excited to share this information with anyone who may be able to benefit from this life-changing brace called the ExoSym™ and will provide information below.
My Medical History
At the age of 21, I was diagnosed with systemic lupus erythematosus, an autoimmune disease, which among many manifestations, causes inflammation throughout the body. In my case, the inflammation affected my pericardium, joints, kidneys, circulation, skin, and connective tissue. It is chronic, incurable and characterized by daily fatigue and random flare-ups which can last a year, as well as fortunately, long periods of remission. It is referred to as ‘the disease with a thousand faces’ as no two affected people experience the same symptoms.
In February 1976, during my third year of completing a Bachelor of Fine Arts at the University of Regina, I was sitting at a pottery wheel turning mugs in the arts studio, when I began to feel an aching and then severe pain move up my arms and into my chest. Each small breath felt like a knife turning inside my heart.
Admitted to the hospital a few hours later, I was diagnosed with pericarditis, an inflammation of the sac-like tissue that surrounds the heart, and soon after that, systemic lupus erythematosus. My recovery took all summer, but in the fall, John and I returned to Regina – John to teach and I determined to complete my degree.
Jude, 21 yrs, a few months after being diagnosed with lupus in Regina, Saskatchewan, Canada.
The Next 40 Years
For me, the diagnosis meant a life-long challenge to learn to live well with an incurable, unpredictable, often debilitating and isolating disease which very few people had heard about and did not understand.
The disease is characterized as one of the ‘invisible’ illnesses which basically means that you can live an entire life experiencing the many manifestations of lupus without people ever knowing or seeing that you’re not feeling well. This, in turn, can cause anxiety and depression and make social settings and interactions difficult. It is hard to make plans or commit to events as you can be feeling fine in the morning, and later in the day, suddenly feel your body completely drain of all energy. Sleep is the only antidote.
In 1991 I began to write, and three years later, completed a book of nonfiction detailing my experience of living with lupus called The Language of Water . The book was published in 2002 by Thistledown Press, Saskatoon, Canada, and can be borrowed from the Vernon Public Library or through any inter- library-exchange program in Canada. I wanted to write this book for other young woman diagnosed with systemic lupus, to provide support and information.
The Language of Water has been endorsed by the Lupus Foundation of America, the British Columbia Lupus Society, and Lupus UK.
Surgeries, Infections, Daily Life
Throughout my life, I’ve had seven surgeries in all, some caused directly by lupus and some indirectly by the medications I’ve taken to control lupus. Other surgeries have ‘triggered’ a lupus flare, causing the disease to become active.
I’ve had 6 or 8 episodes of lupus nephritis which involved inflammation, and eventually, end-stage function of both kidneys. During these acute flares, I took high doses of steroids (prednisone) and immunosuppressants (azathioprine) to suppress the inflammation. This treatment would last a year from beginning to full remission. I’ve taken a lower maintenance dose of these medications daily since I was 21.
Because these drugs suppress the immune system, I’ve contracted both rare and common infections, which in turn have required more medications and sometimes more complex health concerns.
And Now the Good Stuff
Even though our life was dogged with the presence of illness, John and I found we held within ourselves the necessary tools to live a good life. Some of these tools were inherent to our nature and some were learned through trial and error, ups and downs, and alternating strengths between us. We’ve always laughed a lot. We’re curious, creative, and we love each other. We’ve been able to voice, and then steady our anger, sorrow, frustration, and deep weariness in times of great stress. I’m grateful for our ability to recover, and to go on again not only with grace, but with joy.
We’ve travelled – even spending two different years – writing and painting in Europe. We’ve worked in our separate fields. Me offering art education to hundreds of school kids through a public art gallery program, conducting creative writing workshops for teens and women, and preparing exhibitions to exhibit my artwork. John teaching literature and creative writing, writing and publishing essays, books of prose and poetry, editing, and writing and performing songs with a trio of musicians.
Art Gallery Teaching
If things had been different for me, I would likely have worked full-time or at least part-time in a consistent way. As it was, all my working opportunities were arranged to fit with the ups and downs of chronic illness which meant that they were shorter contracts, workshops, or self-designed. The longest I worked in one job was seven years and that time was interrupted by a year’s leave due to a lupus flare, and more happily, by a year away working in Europe.
Art Gallery Exhibiting
Beach Exploring, Tofino, BC
And then in 2013 the Need for a Transplant
After 35 years of having lupus nephritis, I was told I had reached the stage where my kidney function was so low that it was time to think about dialysis and to place my name on the British Columbia kidney transplant waiting list. The normal wait time in Canada for a kidney transplant is 7 years.
How can I describe the feeling when a friend came forward and offered to go through the testing process to see if he was a kidney match for me? Or when my two brothers and sister started the process? I am forever grateful to them. I would not need to begin dialysis and would not have to wait years for a possible transplant.
My brother Joe was a perfect match.
In 2015, four months after he retired, Joe and his partner Heather, John and I and the rest of our family went back to Vancouver. Joe and I had our surgeries consecutively with two different transplant teams. (Not the kind of celebratory vacation Joe would have chosen to take after a long working career, nor the one I would have wished for him!) Joe recovered easily and well. The kidney he kept, and the one he donated to me are both working perfectly. A reminder here folks: we each only need one!
Retired now, John and I were excited to think that after my transplant, we would be able to get back to our lives once again and were planning to take a few small trips in Canada. I would be able to get back to painting and participate in more activities, and he could continue writing and singing, free of the strain my kidney disease caused. We had, with the help of family, surmounted another enormous obstacle, and perhaps most surprising of all, the lupus had seemingly ‘burnt’ itself out, an unusual but occasional occurrence.
We thought we could take a breath.
October 2015, Vancouver, one month after the kidney transplant.
But this was not to be.
Foot and Ankle Osteoarthritis
For several years before the transplant, I had been experiencing some pain in one ankle. I had a pouch of inflammation over the outside bone of the ankle. My ankle ached and was sore after I walked or hiked, requiring icing and rest.
I was aware that long-term steroid use could introduce many side effects including the development of cataracts, avascular necrosis of the bone, and osteoporosis as well as Cushing syndrome, muscle weakness and pain, insomnia, weight-gain, hyper-energy and when reduced, depression. I had experienced all of these, but fortunately, not avascular necrosis.
I had always tried to stay as physically active as possible when the disease was flaring: long swims in the lake, laps in the community pool and long walks on alternate days. I would wear hiking boots for support, clearly, the walking helped me cope with the months of being ill. The high doses of steroids would give me pseudo-energy to accomplish this, and then when the prednisone was reduced, I would experience muscle weakness, fatigue and depression for several months.
At that point, I would slowly begin again to build my strength, and after almost twelve months of disease activity and recovery, be back to ‘myself,’ and able to return to playing tennis, cross-country skiing and hiking. Nothing had ever been mentioned by my doctors about osteoarthritis or reducing weight-bearing activities while taking prednisone. In fact, weight-bearing within reason is recommended even after an osteoarthritis diagnosis.
Since the transplant, my ankle pain had become increasingly more painful and pain had developed midfoot through the other foot. My range of motion had become more limited. I talked to my general practitioner, two orthopedic surgeons and my renal specialist to ask advice, trying out various prescription pain killers, icing and resting my feet, scrolling the internet for ideas and solutions, taking pain workshops, using air-cast braces and compression socks, pain creams, doing basically everything possible to relieve the exhaustion and pain. We eventually bought a walker and borrowed a light wheelchair. I began using poles to cross the dog park to sit on a bench while John and Mosey explored the grounds.
There was one saving grace which I discovered two years ago: I could bike because there was no weight-bearing on my ankle and foot when I pedaled. I pushed through the pain of getting on and off the bike and kept going as often as I could.
CT Scans and X-rays had revealed I needed a total ankle replacement in one foot and a midfoot fusion in the other foot. I had bone-on-bone cartilage loss in both feet.
However, as a lupus and kidney transplanted, immunosuppressed patient, I’m considered high risk for total ankle replacement or midfoot fusion and have been cautioned against this kind of surgery by several doctors and surgeons. The ankle is complex and presents more challenges than the hip or knee in even the immune-healthy patient.
The real possibility in my case of deep infection, healing complications, and/or the need for additional corrective re-surgery is not a risk John and I are willing to take, even if I am eventually considered a candidate. We’ve had enough.
It seemed that if I wanted to continue to engage in life, I had to look at a wheelchair, one that could manage walking trails, town shopping, and everyday tasks. I had seen the words “voluntary amputation” written in one of my medical reports. I could not bring myself to discuss this surgery with my surgeon.
Stalling, I developed anxiety about my inability to stand longer than two minutes or to walk around the house and do chores. It seemed so unfair that I was healthy, so full of possibility, and yet I was in constant pain and immobile. It was out of the question to paint which I do standing up. I spent most of my days, seated. Eventually, I stopped going to the dog park with John and Mosey. I cancelled events. I withdrew. I felt hopeless.
The Chance Discovery of the ExoSym and Renewed Hope
In October of 2018, while scanning the internet yet again for braces or any other device which could reduce pain and restore mobility, I came across a CTV news article discussing a device which had been originally invented in 2009 for the military by Prosthetist, Ryan Blanck, initially called the IDEO and now, for civilians, the ExoSym™.
The device is described as a cross between an orthotic and a prosthetic, a limb salvage device to prevent amputation. Since 2013 when the device was made available to civilians and the name changed to ExoSym™, patients from all over the world have travelled to Gig Harbor, Washington, to be fitted and cast by Ryan and to take part in the week-long physical fitness and training program.
The ExoSym™ incorporates many socket design concepts used in prosthetic limbs and utilizes a specialized dynamic energy-storing strut system often used in prosthetic running limbs for amputees. This adaptation provides injury-specific deflection, energy storage and power, all while maintaining control and minimizing pain.
I will never forget reading that article, feeling my heart start to pound and the surge of hope travel through my body. Could this possibly…was this the one thing? By the end of the article, I was sure I was going to take a leap of faith. There wasn’t an ounce of hesitation in me. All my skepticism caused by promised, but never actualized solutions, vanished.
I wasn’t deterred by the price tag, even though we had already spent too much money trying out devices and booking appointments for physiotherapy, massage and gym strengthening programs. This was my life. I needed help. Reading the information and watching the videos, hearing army personnel and civilians talk about and demonstrate the ExoSym™, simply added to my surety.
John was completely on board. This could change my life. And his.
I contacted the clinic in Gig Harbor, asked questions, received and filled out a questionnaire required to determine if my condition (bilateral foot/ankle osteoarthritis) would make me a suitable candidate for the ExoSym™and its accompanying week-long training program.
I obtained a prescription from my doctor and sent x-ray and CT Scan results and letters from my internist and orthopedic doctors to the clinic. My approval would mean that Ryan Blanck felt that I was a good candidate to receive the ExoSym™, that the device could decrease my pain and get me mobile again.
I was approved!
John and I travelled to Gig Harbor for five days, two weeks before Christmas 2018, and returned for two weeks on January 1, 2019. Below, I will include photos of my casting, the day I received two ExoSym™ and the training process in Gig Harbor with Jared, the physiotherapist. I will also provide links to videos below for information. Please feel free to contact me if you have any questions for yourself or other patients who may decide to pursue this device. I would be more than happy to provide any information I can. firstname.lastname@example.org
Ryan removing the Casts
Receiving the ExoSym™
Each patient who is accepted as a candidate for the ExoSym™ needs to commit to and maintain core rehabilitation as well as learn how to walk differently, using core instead of lower limb strength. This is essential for the ExoSym™ to operate fully and properly. It is hard work.
Ryan emphasizes that this is a long process, taking from four to six months just to feel comfortable and functional wearing the device, and even longer to work up to sports like running, skiing, tennis and snowshoeing if those are the activities you’re aiming for. I know I am well-suited to the commitment required after all the practice I’ve had recovering from lupus and kidney flares, living for so long with chronic illness.
Side-step Exercises, Gig Harbor
It was astonishing to be able to begin training the first day I received the ExoSym™. I began walking holding onto a bar, feeling as awkward as my dog, Mosey, wearing snow boots, my balance wonky, and my knees buckling. The next day I began cross-fit exercises - accompanied by Jared, the physiotherapist, who showed me how to do the exercises properly and safely. Each exercise was difficult but accomplished without pain.
Hauling Boxes, Gig Harbor
Pulling Tractor Tire Backwards, Gig Harbor
At home now and continuing my training, I walk every day and have been working with a kinesiologist in the gym where my physiotherapist has his practice. I’m working on balance, going up and down stairs and am slowly gaining the strength to walk uphill, my biggest challenge. Since getting my ExoSym™, I’ve been out to the dog park and walked in the snow with John and Mosey and been on short walks with friends. I feel like kilos of emotional weight have been lifted off my shoulders. I am less out of breath, and my cardio strength is returning, too. Each week I feel stronger, more balanced and more ‘at one’ with the devices. I feel like I’m living again –that the best is yet to come.
Three weeks into wearing bilateral ExoSym™, Feb. 2019, Vernon BC
My future goal is to participate in the annual BC/Yukon Kidney Disease Walk fundraiser, an event I walked once, and since have biked as it has been too painful to be on my feet. I can’t wait.
I asked my husband John to write a few words from his point of view to include here:
I’m not sure what to say here, and that’s funny from a whole other angle for any of you who know me: that I might be speechless.
Sometimes, when I try to voice what Jude has been through over the years, and what I have been through and witnessed as her partner, I either want to laugh or cry because it’s hard to catch it all honestly. You know. Jude’s lupus was always hard to see. We learned every trick in the book to deal with it over forty years.
But I have to say that what has happened to Jude since the kidney transplant has been, ironically, the toughest of all her trials, and the trickiest set of physical challenges to solve. Eventually, it came down to either the wheelchair or amputation or both. Or, on the other side abruptly, the ExoSym™. And no matter which of those doors we chose, there was anxiety, risk and, naturally, the depression, denial and frustrations that accompany that anxiety and risk.
We’re especially good at handling these things, but I confess I have worried that the complexity of it all over time might simply wear us out completely. Risking the ExoSym™ has, in fact, changed everything for Jude and me. It has been the perfect thing to do. We know that now.
Everything Jude and I have done, all our plans and hopes for retirement has been achieved on a single salary and pension. And we couldn’t be happier. Our lives have always been modest in a beautiful way from that point of view. We feel very lucky, in fact. It’s just that the ExoSym™ on top of the kidney transplant placed an unexpected strain on those plans and hopes. Jude is, truly, a warrior, and I simply stare at her sometimes, in wonder.
Unfortunately, the Medical Services Plan of BC and our third-party insurer, Green Shield, do not cover medical devices purchased outside of Canada. Gig Harbor, Washington, is the only place in the world the ExoSym™ is made which is why Canadians and other candidates from all over the world travel there to obtain the device.
Thank you for taking the time to read my medical story.
Please pass on any of the information included here to anyone you know who may be interested or who could benefit from knowing more about the ExoSym™, systemic lupus and/or kidney donation.
All the best,
The Video Jude Discovered on CTV News:
ExoSym™ Leg Brace - Limb Salvage - Hanger Clinic
Jude’s Expenses for bilateral ExoSyms and travel to Gig Harbor:
Braces: $9,000 American per brace = $12,000 Canadian = $24,000 CAD
Two trips to Gig Harbor, Travel and Accommodation Expenses: $5,000
Yikes, none of my shoes are big enough to fit the ExoSym™: 3 pairs of custom shoes: $1,000
Expense Total: $30,000
GoFundMe Goal: $20,000