Read time 2 minutes
Q-1) Could you briefly describe your story?
A-1) I was diagnosed with ‘’Polyarthritis” when I was half a year old. My right ankle doesn’t bend over and my leg is small and thin. In my country Lithuania I was second with polyarthritis. Before I was diagnosed with polyarthritis doctors thought that my left leg was bad and it must be cut off. But the doctors didn’t cut it off, and then my parents took me to another city and the doctors looked at my fingers and they said immediately that I have polyarthritis. And that’s how I got diagnosed with “Polyarthritis”.
Q-2) How has the disease changed your life, in terms of diet, work, and other activities?
A-2) It really changed because I didn’t walk until I was 4 or 5 years old. I didn’t have any diet or anything like that and I don’t have work. The activities are that I started walking.
Q-3) How do you keep yourself updated about your disease? Please specify if you are a member of an advocacy group; depending on government initiatives or reading about your disease.
A-3) I just read about, and I go to the doctor every 2-3 months
Q-4) Are your treatment options easy to access? Are they expensive? Is there a permanent cure for your disease?
A-4) My treatment is compensated by the state. And they are expensive. There is a permanent cure for my disease, I just take an every-week injection
Q-5) How did the treatment affect your family’s financial situation? Did you have to take loans or borrow money from friends and family?
A-5) No it didn’t, my family didn’t take loans or borrow money from friends or family
Q-6) Are you trying out any alternative healing techniques?
A-6) Yes, I am
Q-7) How did you and your family deal with your changed circumstances?
A-7) They dealt very easily
Q-8) Please share one aspect of your journey that touched you most.
A-8) Medicine test on me, it happens every 2-3 years
Q-9) Do you have a secret to staying strong? What inspires you to keep fighting?
A-9) My secret is to be confident and don’t be scared of what other people think
Q-10) What would be your message or advice to patients diagnosed with rare diseases?
A-10) Just don’t be scared and accept yourself as you are.
DISCLAIMER
The views expressed in this article are the author’s own and do not represent any kind of medical advice.
