Daniel Jensen has lived his whole life with a rare disease. Literally. He was just nine days old when diagnosed with Factor VII Deficiency – severe grade.
Now 37, he works full-time for an international medical equipment supplier alongside his father, while raising a four-year-old daughter with his partner, Vivi, in a small town near Roskilde, Denmark.
"Factor VII Deficiency is in many ways the same as the other haemophilia diseases, we are just fewer,” he said.
“It’s the same where you miss one factor that makes [the blood] function as it should when you get injured. But where they don’t have Factor IX or Factor VIII, I don’t have Factor VII."
“If I don’t take my medication, I will get bleeds probably within a few days. Small bleeds, joint bleeds. I take medication daily, so I don’t feel it unless I get injured in some way. And if I get injured, I will always take an extra dose.”
“I feel more secure. I can feel in my body that it hurts less. In general, I feel much better.”
Despite the challenges, an adjustment to Daniel’s dosage 18 months ago has led to noticeable improvements, as he continues to enjoy a balanced lifestyle – including frequenting the annual Roskilde music festival.
“Now I feel more secure. I can feel in my body that it hurts less. Just in general, I feel much better,” he said. “What brings me most joy is having a flexible work life, spending time with my family. And being very social with my friends.”
Daniel is also instrumental as an advocate in the local haemophilia community – both as a board member for the Danish Haemophilia Society and as Chair for the Danish Research and Support Fund.
“The Research and Support Fund offers support to scientists who might need funding for research that will be beneficial for haemophilia. Or it can be as simple as a family with a haemophilia child who have struggled for a few years and would like to go on a vacation.”
When it comes to his own life, he’s hopeful that Factor VII will eventually see similar advancements that have been developed in other categories.
“It might sound mundane, but it would make a huge difference to only take medication once a week.”
“To be honest, I’m filled with both joy and envy for my fellow haemophilia community,” he said. “They will get treatment that lasts longer. They might even get gene therapy, that would make them totally free of medication.”
“I hope that my treatment options will improve in a similar way. As far as I know, I’m one of the last patients – if not the last – in Denmark that still gets medicine made of plasma.”
“It could be as small as going from plasma to a recombinant medicine, so I don’t have to take it as often. It might sound mundane, but it would make a huge difference to only take medication once a week and not have to store it in the fridge, so I can travel more easily.”
“I’m pretty sure my girlfriend would love to have an extra shelf [available] in the fridge.”
“That would allow me, whether I go to a business trip or vacation, I don’t have to plan extra. I don’t have to take the dialogue every time I go to a hotel whether they have a fridge in the room or if I can borrow the kitchen’s fridge for a couple of nights to store my medicine.”
“Even more at home – I’m pretty sure my girlfriend would love to have an extra shelf in the fridge.”
His advice for children or parents receiving a haemophilia diagnosis, first and foremost, is not to lose hope.
“Just be open and get a good cooperation with the doctors and healthcare professionals. They know a lot about the disease, but they need feedback to see how it is to live with the disease. It’s that cooperation that makes a good, healthy treatment.”
There are 7000 known rare diseases, but 95% still don’t have a cure or adequate treatment options. Rare diseases need more than rare solutions. That’s why Novo Nordisk is driving change to create a better future for people living with rare diseases.