Daniela D. - Diagnosed at age 17

My story with lupus.

This is about how my story with “him”, the lupus, commenced. An unfortunately ever present and loyal mate, who never abandoned me since then, that only from time to time seems to take some break, leaving me in these moments apparently free.

It all started when I was 16, now I am 47. All started with red rashes on my arms, skin, coming and going every month or so.

After a day at beach for a few hours: my chest turned a rash, like a huge bubble appeared. Then on my belly too. I felt scared.

Time passes.

I started experiencing pain in my joints, in my muscles, and fever. I was attending high school in that period, but I got worse and worse to the point I could not even get out of bed. My eyes were red. I could not even wear my shoes, my feet were painful.
I had to quit sports; everyone at school was accusing me, it was just a pretense, an excuse for laziness.

I was terrorised whenever a new day was starting, since I knew pain was coming too.
The situation was worsening. I was more often in the hospital than home. All therapies were totally ineffective.

I was simply surviving in pain, and I wanted to die.

I met a fantastic doctor who finally understood what was going on!

And he started treating me for what I really had. There were no miracles for me, but luckily there were drugs.

We started a massive cure so much to stun me, but at least it was a relief for the pain and for a few hours my skin feels free.

But I had my family around me. Their physical and mental support made me feel protected and safe. My mother and my brother care are imprinted in my memory, and in my heart.

Today, I accept lupus in my life.

Pain comes, but the right medicines and treatment can help keep it under control.

My body changed, but I accepted this too.

I am physically fragile, but fight every day.

I hope the research will come one day to a cure at least for younger generations.

I am grateful to my husband: he loves me, also with SLE.