Posted at 3:01 PM
From Jenny, in Sweden
Ever since I was a child I've wanted to work at a library. I had no idea that I had the Marfan syndrome until I was 21 years old. And at that point I didn't know much about it and how it affected my body. I've always considered myself as weak and I've had lots of pain in joins and muscles. I have never thought that this would stop me from doing what I've always wanted, work at a library.

These recent years I've had the opportunity to work at a university library. I totally loved it, just as I thought I would! The only problem is that I have SO much more pain in my neck, shoulders and lower back. As I'm having these constant pains my temper isn't so good and I have a hard time finding peace and comfort on my free time. I doesn't even work full time, and I'm only 26 years old. I really don't know if I can find a job where I can work full time, without these pains.

It feels depressing to know that I probably can't continue with the work that I love so much. I just can't see myself doing anything else... Some parts of having this disease is just horrible. I haven't had any cardiac involvement or any other serious symptoms connected to the syndrome, and I'm glad I haven't. But it's not fun to only have 'minor' symptoms that affects the quality of life so much.

Best regards
Jenny in Sweden