World Rare Disease Day

When the disease is not seen: the invisible reality of MPNs

Every February 28, World Rare Disease Day is observed. A date that highlights rare conditions such as myeloproliferative neoplasms, known as MPNs.

For many people living with essential thrombocythemia, polycythemia vera, or myelofibrosis, this day has special meaning. Not only because of the need for more research and equitable access to treatments, but also because MPNs are often invisible diseases.

In many cases, they are not noticeable at first glance.

Those living with an MPN want to continue with their work, family life, and daily activities, but the reality is different. From the outside, everything may seem fine. From the inside, it is not.

They constantly live with symptoms or side effects caused by treatments.

• Persistent fatigue.

• Abdominal swelling.

• Difficulty concentrating and brain fog.

• Physical pain.Shortness of breath.

• Emotional disorders.

When others do not see visible signs, comments such as “but you look fine” or “you don’t seem sick” may arise. These phrases, although not always said with bad intention, reflect how little is still known about these conditions.

On World Rare Disease Day, it is important to remember that what is invisible also exists.

Below, we share the testimonies of six people living with MPNs. Their experiences help us better understand what it means to live with a disease that is not always externally visible.

In the field of MPNs, there are resources designed to support this journey.

MPN World offers an international space where patients and caregivers can connect with others in similar situations, share experiences, and access updated educational content.

MPN Journal is a practical tool to record symptoms and track progression, helping to create more structured conversations with the medical team.

In addition, the Global MPNSF Foundation offers webinars, workshops, and wellbeing projects organized to help patients integrate emotional care and quality of life into their process.

Because wellbeing is not measured only in medical results, but also in how we live every day.

🌍 This is what the Global MPN Family is about: connection, learning, and support across borders.

To keep offering webinars and patient-focused spaces globally, we rely on community support.

Donate and help us keep bringing the world together for MPN patients and families.