Alex Hackney’s Story

As a child growing up battling juvenile dermatomyositis, becoming a future marathon runner was the furthest thing from Alex Hackney’s mind. Not only did she not imagine completing a marathon, but she also never imagined that she’d one day strive to complete a circuit of marathons that would include the prestigious Chicago and New York Marathons. For 15 years, Alex’s childhood and teenage years were filled with the hurdles of JDM despite her best efforts to pursue the activities she loved, including soccer. Although there were many difficult times, Alex attributes her competitive spirit and drive to the years of fighting a rare disease.

 Originally a Philadelphia native, she was diagnosed and treated with JDM locally, eventually seeking out the leading expertise of Dr. Lauren Pachman in Chicago. After years of battling the disease and a significant disease flare, Alex and her mother began traveling to Chicago for treatment with Dr. Pachman in search of the best possible care. Although the trips to Chicago had their trials, Alex and her mother made the most of this time to strengthen their bond. They became frequent residents of the area’s Ronald McDonald House.

These trips to Chicago became routine, and until recently completing the Chicago Marathon, Alex had mixed feelings about visiting Chicago. With the support and encouragement of her fiancé, she was able to gain some closure and perspective from her early years in the windy city. 

After returning from her third marathon, we discussed her journey and what has led her to pursue distance running despite her previous challenges.

How did you get into long-distance running?

My fiancé and I were in Chicago to support a friend running the Chicago Marathon. My fiancé Ryder wanted to make it a weekend getaway for us, and he knew the significance that it had for me. He knew it would be nice for me to see the city without being there for doctor’s appointments and get to see Chicago in a new way. After watching our friend, I said we could do that too! Ryder quickly replied, “I don’t think you realize how hard it is to train and complete a marathon.” I convinced him we could do it, and a few days later, he had printed our training schedule.

Did you go right into a marathon as your first race?

No, we started running a handful of shorter races to build up at first, but then Covid hit, and a couple of our races were canceled. We kept training through Covid, and it provided us with a nice coping mechanism throughout that time. Following Covid, we completed our first half marathon and then set a goal of tackling the New York Marathon. This was all in the midst of me starting my career, so it was an extremely busy time. To date, we’ve run three marathons!

You started running and training a couple of years into remission from JM. Were you worried about a potential flare or any setbacks?

Yes, definitely. I was only a few years removed from active disease, so it was definitely in the back of my mind. When my relationship started with my fiancé, JM wasn’t a part of my life, so I was holding back these feelings of concern. He was supportive but had no idea what I had experienced growing up with JM. I would look back at certain flares and wonder what factors contributed to my JM flares. When we first started training, it was hard to just condition myself to run any significant distance, and then it was triggering at times because the muscle fatigue and discomfort were reminiscent of previous flares.

What precautions did you take to pursue this hobby?

First, I discussed my training schedule and goals with my rheumatologist, and they cleared me to go for it. As I mentioned, I worked through my training schedule slowly, and I also took all the sun precautions.

What advice would you give to your younger self or the younger kids who may be battling now?

I don’t think I fully allowed myself to be as happy as I could be for a lot of years. I feel I may have missed opportunities, thinking that I couldn’t experience certain things having JM. Now, I’d focus more on the things within my control and not think happiness can’t be attained, even battling difficult things. I was happy throughout many years, but I maybe didn’t have the confidence to pursue certain things. I’d tell the kids battling now to keep fighting for their dreams and the things that make them happy. You can reach your dreams!

Your most recent marathon took place in Chicago, a city that you frequented for treatment and healthcare. How did it feel to return to Chicago to conquer a major marathon?

It was a surreal experience and a full-circle moment. I was able to turn years of pain and frustration into something beautiful. This race was symbolic and one of the most rewarding accomplishments of my life. Having the strength and perseverance to conquer 26.2 miles and even running past the Ronald McDonald House that I often stayed at was indescribable. It was a feeling of closure and accomplishment for my mom as well, being able to see me run down the very streets that we visited during some difficult times. A mile into the race, I saw my mom, and we instantly embraced and started bawling!

Now that you have conquered a few marathons, do you have any plans of conquering ultra-marathons or even longer endurance races?Currently, our goal is to complete the six world marathon majors, which include our next race in April in London. After that, Tokyo and Boston will be the remaining races to complete the world marathon majors. It’s awesome to realize that we have completed half of our majors

What is Juvenile Myositis?

Juvenile myositis, including juvenile dermatomyositis and juvenile polymyositis, is a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues.

Getting the Diagnosis. Megan Curran, MD

Getting the Diagnosis

It often takes a bit of time for children with juvenile myositis (JM) to get a proper diagnosis. This is due to the fact that

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