“So, I went knocking on doors. Finally, I got a specific blood test, and they told me about this disease, acromegaly.”
“Not many doctors in Denmark know about this disease. When I finally got my diagnosis, it was a great relief because I told the doctors for 10 years that something is wrong with me, and they told me all the time that I was normal."
“Although my journey to diagnosis took 10 years, that’s actually [considered] short for this disease. For some people, it can take 30 years.”
“I’m a lucky person, I don’t take any medication, which is rare for an acromegaly patient. When I have bad days, I put on some music that gives me some good energy and I dance. I think ‘are you going to cry, or are you going to laugh?’ And I always choose to laugh. I want a happy life.”
“I read about the disease. I could see that [a high percentage] of acromegaly patients were getting better after surgery, and it gives you hope that you are also going to get well.”
So, how has her journey with acromegaly changed Marian’s outlook on life?
“It’s a new identity. So I’m trying to find the things that bring joy in my life, like the horses, and the nature, and my farm, and my customers,” she said.
“It gives me a place where there’s no stress. Nature makes me calm. And horse-riding is kind of a meditation for me. Some of the symptoms with acromegaly are anxiety, depression, and stress [due to] the hormones going on. So you need a peaceful, quiet place to take care of yourself.”
“After surgery, I have chosen to look at my life in another way – I want to help people. So now I volunteer a few hours a week to help new parents care for their babies.”
“That’s also why we are going to be foster parents – to help people. We are opening our home for a new member of the family. That’s my future goal.”
"In summer, a few times a week, I teach art classes to children. I teach them how to express their feelings through paintings. I also sing in a choir. You can never be sad when you sing.”
When it comes to acromegaly, Marian is intent on increasing awareness and continuing to build a supportive patient community.
“I hope in the future that it would be possible to get an earlier diagnosis, to find this rare disease much earlier than 10 years as they did with me. I hope that patients will be able to go to one place to get help – not having to go to 100 different doctors who don’t know about acromegaly.”