Faces of hope

My name is Jorge Antunes.

Family Matters. I’m married to the most amazing woman, Clara, who keeps me going every day and supports me in everything that I do. Clara and I are both trail runners and love all things outdoors that we share with our dogs. We have three children (Kristen, Ryan and Jordan) and a granddaughter (Grace). I was born in Portugal and immigrated to Canada as an infant in 1968. I am fortunate to have a good career as a Professional Engineer with great thanks to my parents Jose and Lucilia, who taught me the benefits of hard work, kindness and perseverance.

Health Matters. In late 2022 I had been suffering from carpal tunnel syndrome and decided to have a release surgery on my right hand in April of 2023. Additionally, I had been having swelling in my legs and ankles along with some noticeable unexplainable changes in my blood work. During the surgery recovery period, the fingers in my right hand started to show curvature and I had noticeable tightening in the tendons of my fingers. This condition became progressively worse and while my hand fully healed from the surgery, I began to lose a great deal of functionality in all my fingers. I sought answers but was unable to find out the cause. As time progressed in 2023 the problems in my right hand started to occur in my left hand leaving that hand progressively worse. By early 2024, my condition spread to my feet and lower legs. I was forced to give up my running and was finding it difficult walking and going up and down stairs.

I kept searching for answers and advocating for myself.

My condition didn’t seem to make sense compared to simpler health problems. Finally, I was fortunate to be referred by my family doctor to a rheumatologist who began to investigate the causes of my symptoms. She immediately noticed and commented that I was likely dealing with an autoimmune response. She ordered a lot of blood tests. I have never seen a lab requisition with so many check marks. All the while, my mobility and condition were worsening. There were no definitive answers.

Then came my in-person visit in May 2024. My rheumatologist asked me a simple question… “Have you noticed anything new with your symptoms lately?” I said, “I have noticed the weirdest thing starting about three weeks ago. The skin on my arms is so tight and it feels like someone put a tourniquet on my skin and is tightening it.” She immediately examined my skin, and she said “I know what you have…you have Scleroderma!! We need to start to treat you right away.” We immediately began a treatment program of various immunosuppressant drugs and started investigating the status of the disease in my body.

That day began a whirlwind of specialist doctor visits, CT scans, MRI’s, lab tests and a lot of other tests I have never heard of. This had a big impact on my own mental health and the anxiety of dealing with a disease with no cure. It seemed like every week was filled with a new fear, worry, medical visit or questions with no immediate answer. We began to suffer from what we called “medical fatigue”. Those months were spent at hospitals, specialist appointments and taking many new medications. Clara was my rock, I could not have gotten through those weeks and months without her strength, her being by my side, and keeping me motivated and moving forward.

Taking Matters into Our Own Hands. We decided that we needed to take our life back. Every time I received a call about an upcoming test or appointment, we wouldn’t just take the first available date or time; instead, we would ask for dates that allowed us to double up visits and minimize disruption to our lives. We set a limit and refused to talk or consider medical things on our weekends. By this time, the medications were starting to work, and the swelling and pain was leaving my legs. I could start running again. This all played a part in releasing my stress and improving my mental health. I started training again and it was making me feel so much better.

Despite struggling with my health in January 2024, Clara and I both signed up for the Javelina Jundred 100 km trail race in Scottsdale, AZ, scheduled for October 2024. Even with my undiagnosed health problems at the time, I was hopeful that I could run. After my health stabilized in the late summer, I was able to train again with the help of my coach Hilary, and we set a realistic goal. The 100 km was out, but we agreed on one loop (36 km). I couldn’t have done the training without Clara pushing me every weekend to put in the miles! I talked with my doctors and told them I wanted to race. I wanted to prove to myself that I could overcome my condition. Their advice to me was to listen to my body and not to overexert myself and risk a setback in my health progress.

Fast forward to October 26, 2024 and I’m at the Javelina Jundred start line with my two best running buddies, Clara and Jen to give it everything we had in the desert. It was an amazing time, and I wouldn’t trade it for anything. 

Every Minute (or Mile) Matters. The official race roster recorded a DNF (Did Not Finish) at Rattlesnake Ranch with a running time of 5:27:38, covering 27.52 km. This is the hardest run I have ever done in my life. I had never run that distance in my life, this was a PB (Personal Best) for me. It was no joke; the temperature was over 40 degrees Celsius out there. The smart choice was to protect myself, so I pulled out of the race! I was feeling great at the time but I did not want to hurt myself. I had promised everyone that I wouldn’t do anything to risk my health, and I didn’t!

One of my favorite memories is the lone park bench in the middle of the desert. How did it get there? Who hikes 20 km in the desert to get there? How long can you even sit there? So many questions… I took every step as though this was the last time I may ever be there. I enjoyed every moment.

I am happy to say that my multitude of tests is currently showing that my medications are working well and that my Scleroderma has stabilized. I continue to run and train and improve my health every day. I try to stay positive and live every day to the fullest. I really want to thank my doctors for all their hard work in finding a path to keeping me healthy. Thanks to Clara, her mom Gizella and my entire family for keeping me motivated and positive. We cannot change what happened in the past, but we can choose to live the best life every day and be thankful for what we have.

By the way, Clara and I are signed up for the 2025 Javelina Jundred in October. I plan to do my best to finish the full 100 km this time!!