Tuomo Leppänen, a 50 year old dad, and green technology IT professional, has many hobbies, such as: Japanese swordsmanship, making music, photography, and even collecting and restoring vintage radios. He also happens to have a rare illness.
Tuomo grew up in the small city of Lahti in Finland about 100 kilometers north from the capital of Helsinki. He never felt the need to leave his hometown with sweet childhood memories. He recalls: “My childhood was in the 1980s, which people often nostalgically call the ‘golden age’ of childhood. I remember the summers feeling long and warm, with lots of lakes to swim around Lahti.” Until last year, he worked as a product manager in the tech field.
However, there is another thing about Tuomo, something you won’t see from the outside, but affects his daily life. He has Myeloproliferative neoplasm (MPN), a rare type of blood cancer.
“I strive to live just regularly”
Tuomo
In February 2023, Tuomo got the news. He was diagnosed with Myeloproliferative neoplasm (MPN). His bone marrow produces too many platelets, which can cause blood clotting. Therefore, Tuomo has a high risk of having a dangerous stroke. His illness can cause him fatigue and concentration problems.
However, Tuomo uses blood thinners which allow him to live a normal life. “I strive to live just regularly”, he says.
Soon after he found out he has MPN, Tuomo found the Finnish Cancer Patients Association via Facebook support group. He wanted to volunteer immediately.
At the moment, he is serving on the association´s board, where he represents MPN patients as a patient advocate, even internationally. “By being part of the organization, I feel I can help push forward patient issues, raise awareness, and act as a voice for patients. Not everyone wants to be open or speak up, but they know that the information flows through me”, he says.
“Knowledge can increase understanding”
Tuomo
What Tuomo thinks everyone should understand about cancer and people who have it, is that you can’t always see it from the outside and that it is always different for everyone. “For some, cancer is a short-term intense battle, after which they wait to see if it stays in remission. I represent those for whom it’s a chronic illness that slowly worsens, but it takes a long time.”
MPN patients can have almost the same life expectancy as the rest of the population.
Tuomo still feels like there are some cultural and social improvements that the conversation about cancer needs. There are still some people that downplay the cancer’s symptoms and don’t take the exhaustion that cancer causes seriously for example.
“That’s why I always try to talk openly about what I have, instead of hiding it — because knowledge can increase understanding.” He continues: “I think it’s time to break the stigma surrounding cancer and cancer patients.”
Tuomo sees that many things already work well in the healthcare system but the organization works hard to improve and educate furthermore: “I see the organization as the channel through which we can influence the healthcare system, advocate for better treatment access, and push for improvements.”
By: Lotte Schouten and Aino Mielo
