The Man Behind the Day
In his previous life as a successful businessman, polylinguist, husband and father, Timo Söderlund never imagined he’d champion an awareness day or educate researchers and scientists on a rare disease. As we celebrate Aortic Disease Awareness Day this month, we got to know the man who brought this awareness day to life.
To those who know Timo, he’s soft-spoken, kind and selfless, with an energetic demeanor that has helped him grow an online community approaching 30,000 members. In 2012, Timo was diagnosed with aortic dissection (AD), specifically BAV/FTAAD, a rare condition in which the inner layer of the aorta tears, causing the layers to separate. Further research has found that AD is often genetic. Timo’s first stages of advocacy led him to research his own genetic lineage where he found a close relative who passed from the disease.
Like many other rare disease patients, Timo’s diagnosis came with little guidance from his medical team. He left the hospital with no answers and no support organizations to reach out to. That’s when his advocacy began. Through the few connections, he had made, Timo and a handful of others living with AD in his home country of Sweden and neighboring Denmark, formed a small Facebook group. The small Facebook group is now a meeting place for more than 22,000 people. Since establishing this online community, Timo and other advocates have organized in-person meet-ups that prove just how vital rare disease communities are. “We see many meet another AD survivor for the first time and it’s a special experience.”
As these connections grew, Timo’s awareness efforts did as well. He began printing thousands of informational materials and distributing them to universities and hospitals with the hopes the doctors and nurses treating AD patients would share them. Sometimes he still can’t believe he’s considered an AD expert. “Every day I speak with the doctors and researchers discussing the disease in the hopes we can work together to find a cure.”
While the majority of AD connections (that Timo is aware of) have come from social media, he continues to focus on the AD community that is not on social media. “Only half a percent of the AD community is on social media. Without the connections and relationships with doctors, surgeons, nurses, and researchers we would not be able to connect with the others.” Timo continues to spend countless hours online connecting with and educating the medical community, sharing both his experiences on the operating table and the mental health side-effects he’s endured.
Aortic Disease Awareness Day
Since 2016, every September 19 patients, physicians, researchers, family members, and other rare disease organizations from around the world come together for Aortic Disease Awareness Day. The awareness day celebrates the survivors and allows the community to share information that could potentially save the lives of others. Timo’s original grassroots outreach and awareness efforts come to life on this day. And while it may be too late for significant advancements or treatments for Timo, that doesn’t stop his commitment to helping others.
Timo now manages his life with care and medication as well as hospital and therapy visits. Although he spends many hours monitoring his own health, he’s managed to relearn the five languages he “forgot” after the diagnosis and remains a devoted husband and father. Despite his prognosis and the devastating realization that he will most likely succumb to this disease, he’s contagiously optimistic. An optimism so humbling, it’s truly a reminder of what’s valuable in life. Like many rare disease patients, Timo has struggled with bouts of depression but explains that most of the time he is very happy. “I can’t plan for three years from now so I do what I can every day. Knowing I’m not alive forever makes me dare.”
Facing the reality of some rare diseases can be challenging and Timo is painfully realistic when discussing his diagnosis. “I’ve seen friends and other rare disease advocates die, and when they die, their work and their cause die with them. I didn’t want this to happen.” And because of Timo’s dedication to the AD community, it won’t. He’s teamed up with The Marfan Foundation, to keep awareness efforts alive. The Marfan Foundation has taken the reins and begun administrative duties with the online communities he has built but vows to keep the integrity of the online community intact and remember why it was created. Timo remains very much involved with the organization and continues to be the heart and inspiration behind their efforts. “He has a unique skill and energy towards people and brings the patient voice to the cause,” said Angela Crist, marketing and public relations manager, The Marfan Foundation.
Where It’s Taken Him
Most mornings, you can find Timo checking in online, making breakfast for his wife before she leaves for work and regularly checking in with his kids, including his daughter who also has AD. Another important part of Timo’s day includes his regular walk with his very special dog who just so happened to be born on the same day he was diagnosed. “Talking to her all day is as good as any medication.” While his life isn’t quite what he may have imagined, he’s found a purpose in his advocacy work and efforts to connect patients, researchers, hospitals and share his experiences with the disease. Timo’s efforts also garnered him a 2019 RARE Champion of Hope Award nomination.
On September 19 members of the surrounding AD community will be celebrating Aortic Disease Awareness Day. You can find more information on the awareness day including materials in 19 different languages here.