The story of Edilene
About 3 years ago I was diagnosed with Behçet’s syndrome , a very rare syndrome that o never have heard about it before and honestly many of the doctors that I’ve seen haven’t heard about it as well…
I was misdiagnosed for about 15 years until after a very bad inflammation in my eye (uveitis) and no medication wasn’t working , doctors wasn’t sure what to do and they keep saying it was normal until after months a blood test came back with HLA B51 positive , was then referral to a rheumatologist and with all the other symptoms he told me I had Behçet disease.
It was during Covid so I couldn’t have anybody going to the doctors with me , so I suffer all the process by myself.
My life changed drastically, started a process to see which drugs will work, the first attempts didn’t work and I had to change it again , the inflammation was hard to control … I felt like a guinea pig trying different drugs to see which will work.
I was constantly in pain, in and out hospitals , trying to accept the diagnose.
Trying to live the “normal life” , my son having to help me on a regularly basis.
Every day was a different pain and yet I had to work , he need to go to school … many people looking at me complaining and not understanding/believing because I look “normal” for them.
The pain was soooo bad I would get sick from it.., it was months of suffering and torture.
Finally o started a new medication TNF which after 6 months started to work better and as my doctor said I would have to learn to live with the pain.
I wake up every day thanking God for another day , go to work do my daily routine but I’ll never be myself again, I have debilitation and can’t do more than my body accepts… even a walk will be too much sometimes.
At the moment I still see many specialists in different hospitals but I’m better than I was.
Stay positive is a key to keep going..
The drugs are extremely strong but it’s what makes me wakes everyday and continue.
It can be lonely and isolated because sometimes seems that all you do is complain with pain so that’s why no matter what if anybody asks me how I am I will always say I’m very good and continue the day.
Live with a rare syndrome makes you see life from a different angle, I’m thankful for a day that I don’t have a pain and let me say it’s very rare when that happens.
When I can go on holiday to see my family is the best medicine I can get.
There’s no many support here so basically it’s a new start everyday without giving up.