Today, Alex Streczyn’s calendar is packed. In addition to working full-time as a learning experience designer, she is a meditation teacher, a life coach, and an advocate for people living with chronic illnesses, especially her own IgG4-RD community. Thankfully, she’s built numerous practices that help empower her to maintain this busy schedule.
“For me, self-care includes self-advocacy, self-maintenance, self-monitoring, and self-acceptance. My mental health is really important to me, so I go to therapy, and I use mindfulness practices throughout my day to help when I feel overstimulated or anxious,” she said. “I also do the floatation tank, hot tub, massages, exercise, but meditation is the most important thing for me. And these all serve as red flags for me – if I stop these, I know something’s wrong.”
Back in 2018, her impressive level of self-awareness served Alex well. She noticed a mysterious bump on her head.
“After a couple of weeks, the bump wasn’t changing. I went to my doctor and he thought it might be a cyst from an ingrown hair, so I took a course of antibiotics,” she said. “That didn’t change anything. There was still this tender bump that wouldn’t go away.”
Alex’s doctors sent her to get an ultrasound done before meeting with a scalp specialist. However, after the ultrasound revealed something strange with her skull, Alex was connected with a neurosurgeon who wanted to take a biopsy.
“The day of the biopsy, my friend and I got there early. We had a whole day planned for after the biopsy was done but, when I arrived, he immediately started to prep me for surgery,” she said. “He showed me where the scan showed I had a hole in my head, like something had eaten my skull to mush. It was eating away at my meninges, and he said, ‘We’re just going to scoop this out of your skull and scrape it off your brain.’ Those are words I don’t think I’ll ever forget.”
Recovery created another challenge for Alex to tackle. The scar healed well from the surgery, but she began to have some cognitive deficiencies and even experienced cortical blindness in her left eye. Alex’s full-time job is highly visual, so she began to create contingency plans, in case her blindness became permanent. She learned about voice interfaces and made her entire home voice activated.
“After six weeks, we eventually figured out that my brain was swelling up. My body was attacking the site of surgery, which caused edema. It was located right at my right visual cortex, so that inflammation was causing the blindness on the left side, and also caused seizures” she said.
When Alex was finally diagnosed with IgG4-RD and received her first rituximab infusion, she immediately noticed its effects. At first, she had a serious allergic reaction to the treatment; thankfully, after this reaction was treated and they reintroduced the chemical more slowly, she immediately felt better and her sight returned.
“When I was in the hospital, still beaten up from that allergic reaction, I thought to myself: I want to live a life of service. Serving others had always been important to me, but I was living with an alcoholic, so I was basically living a life of servitude,” she said. “My diagnosis led me to make massive changes in my life.”
This is when she became a meditation teacher and life coach, as well as broke up with her husband.
“I believe that living in a state of high anxiety, high alert, never knowing what I was coming home to, was really contributing to my illness and my relapses,” she said. “I experienced a lot of loss during this time. I had this illness, then one of my dads died, the one who raised me through my teens and with whom I was very close. Shortly after that, my marriage fell apart, then my mom died, I lost my home, lost my job, and went through a divorce. But because I had survived this brain surgery, this really intense experience, I knew what changes were really important to me.”
After so much loss, building an understanding community became particularly important to Alex.
“I have a strong need for community, especially because anyone who is not experiencing IgG4-RD has literally no clue what we’re going through. They don’t know what deep fatigue is, and they don’t see me when I’m not functional because I stay in bed,” she said. “When I wanted to become an administrator of the Living with IgG4-Related Disease Facebook group, I wanted to create more connection and community amongst us because we are so isolated. This disease impacts everyone differently, so your liver may give you different symptoms than what my brain gives me, but one thing is certain: We have the same disease.”
Since becoming an admin of the group, Alex created a Google Form where members can learn about healthcare providers that are genuinely recommended by other people living with IgG4-RD. This helps answer the all-too-common question of ‘Where can I find a doctor?’ She’s also adamant about improving access to mental health resources for chronically ill patients, and is recording meditations that this community can access online as one such tool.
In partnership with Mahsa Pazokifard, another admin for the group, Alex helps run a Zoom support group. This is a space that welcomes both patients and caregivers, providing the opportunity for them to share, vent, and learn as they wish. More recently, the duo launched a podcast, IgG4-RD Life. Their mission is to provide a platform where the voices and experiences of IgG4-RD and other rare disease patients are heard, valued, and shared. Through their podcast, they aim to raise awareness, foster community support, and advocate for better care and research for all those affected by rare diseases. They are committed to spreading hope, education, and empowerment, one episode at a time.
“Mahsa and I are working to do everything we can to amplify the collective voice of our community. I say ‘collective voice’ because we don’t want to single people out, since having a disease is highly stigmatized,” Alex said. “There’s always the threat of losing insurance because this is a pre-existing condition, so many people don’t speak out about their illness. But for me, part of giving to this community is speaking publicly about our struggles and needs.”
A significant part of Alex’s current advocacy efforts are focused on IgG4-RD Connect with Trend Community, a group that uses AI to make connections amongst what patients are saying so that researchers can look at the aggregate data and help turn anecdotes into recognized symptoms. (To join the group, connect with Alex on Facebook and complete the screening questionnaire.)
Now age 57, Alex is particularly interested in empowering her community to handle the innate power differentials between a patient and a doctor.
“For a year, I had my best friend come to every appointment with me to write notes. I recommend this because they can take so much off your plate, even ask your questions for you,” she said. “And remember that doctors have egos just like the rest of us, so finding a good doctor is a lot like dating. You want to shop around and find a good fit, someone who’s curious and makes time for you.”
Throughout the past six years, Alex has transformed herself. Rather than let IgG4-RD slow her down, she’s built a life that enables her to pursue all of her passions, including her desire to support others.
“I don’t like to take life passively. Still, my heart breaks for who I was back then,” she said. “But now, if shit’s going to happen, I’m going to do something good with it.”
