Read time 3 minutes
Q-1) Could you briefly describe your story?
A-1) Hey I am Ramuna. 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. My parents decided to take me to another city. The doctors looked at my fingers and they said immediately that I have polyarthritis. And that’s how I got diagnosed with “Polyarthritis”.
Polyarthritis is not a specific type of arthritis. The diagnosis means five or more of your joints have arthritis at the same time. It can be caused by lots of conditions. Including infections and autoimmune diseases. The condition is also known as Polyarthralgia. The symptoms can range from pain, stiffness, swelling, and more.
Q-2) How has the disease changed your life? Your diet, work, and other activities?
A-2) It 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 or read to educate yourself. Do you depend on any government initiatives?
A-3) I 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 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. As it is at the very initial stage, I would like to discuss about it later.
Q-7) How did you and your family deal with your changed circumstances?
A-7) They dealt with the situation quite easily. Having said that it wasn’t that easy.
I was fortunate to get the following support from them:
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They helped me stay active
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They cooked healthy food
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Helped me get plenty of rest.
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They organized all the respite care.
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Spoke to my doctors when I had trouble coping up
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They spent enough time with me. Spoke and understood my situation.
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) Don’t be scared and accept yourself as you are. Visit your doctor if you have symptoms that are not common in nature.
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Asking for help is ok. Don’t fight alone.
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Finding the right doctor or specialist is important.
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Have hope. It’s the key that could take us all towards managing if not winning our battle.
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Advocate for appropriate disability support.
DISCLAIMER
The views expressed in this article are the author’s own and do not represent any kind of medical advice.
