Global MPN Scientific Foundation

Hi, I'm Peter Löffelhardt, and I want to share my story with you. I have lived with polycythemia vera for almost 30 years, a rare disease that affects the blood and can have severe consequences if not treated properly. Next, I will tell you about my experience as a patient, how I have learned to live with this pathology, and how I have tried to help others in a similar situation.

 

Polycythemia vera is a type of blood cancer characterized by excessive production of red blood cells, white blood cells, and platelets by the bone marrow. It makes the blood thicker and more viscous, making it harder to circulate and increasing the risk of blood clots, heart attacks, or strokes. According to the Mayo Clinic, polycythemia vera is a rare disease that usually affects adults over 50, although it can also appear in younger people. It is estimated that the incidence of this disease is about 2 cases per 100,000 inhabitants.

 

I discovered that I had polycythemia vera in 1994 when I was 50. It was an unexpected diagnosis since he did not present any apparent symptoms. During a routine blood test, the doctor found that my hematocrit (the ratio of red blood cells in the blood) was very high. He referred me to a hematologist, who confirmed the diagnosis and explained what the disease consisted of and what the treatment options were.

 

Since then, I have followed a treatment based on phlebotomies (periodic blood draws to reduce hematocrit), aspirin (to prevent clots), and ruxolitinib (a drug that inhibits a protein called JAK2, which is mutated in most patients with polycythemia vera and that stimulates the production of blood cells). Thanks to this treatment, I have managed to keep my disease under control and avoid the most severe complications.

 

But it has not been an easy road. Polycythemia vera is a chronic disease requiring constant lifestyle monitoring and adaptation. Throughout these years, I have had to face several challenges, such as the side effects of treatment, itching attacks (intense itching caused by contact with hot water), discomfort in the spleen (an organ that is responsible for filtering the blood and can be enlarged by excess cells), mood swings, fatigue, or fear of developing myelofibrosis (a condition in which bone marrow is replaced by scar tissue) or acute leukemia (a very aggressive blood cancer).

 

Despite everything, I have not given up or been defeated by the disease. Instead, I have decided to turn my experience into an opportunity to help other patients with polycythemia vera or other myeloproliferative neoplasms (MPN), the group of diseases to which polycythemia vera belongs. For this reason, I am the president of the Global MPN Scientific Foundation, an association whose objective is to give visibility, support, and information to people affected by these unknown and complex pathologies. I also collaborate with the MPN Spain Foundation, which promotes research and development of new treatments for MPN.

​

In addition to my work as a patient and activist, I have a long professional career in business. I held positions of responsibility in various companies in different countries as a consultant and entrepreneur.

 

I hope that with my tenacity and skills developed throughout my life, I can help as many people as possible who live with the same disease and that together, we can find the best treatments that offer us the quality of life throughout this adventure that is living with a rare illness.

 

Together we will make it!