I was diagnosed with NF when I was 18. When I was born, I had some café au lait spots on my body, but my family thought they were just birthmarks. During puberty, my spots increased, and neurofibromas started to appear. In Iran, few people or even doctors know what NF is. I researched through Google and found some information about the complications that I had, and I understood that I had NF. When I was referred to a neurologist, he suggested an MRI and analyzed my clinical features. He told me that I had NF1. He said there was no cure, it may get worse during the time, you may develop tumors, you may lose your mind, and there are no drugs I can give to you. 
No way! Oh my God. What shall I do? What if I get blind? What if I lose my mind? And tumors on my brain?! It was terrible. I couldn’t believe what I heard. For a couple of weeks, I was really sad and depressed. I didn’t tell anyone what happened to me and what I heard.
A few months later, I made a decision. In Iran, there should be many people like me with NF. I thought, come on, you can find them. You can help them and tell them they are not alone. Again, I googled neurofibromatosis, this time in Persian. I found a short paragraph about NF in a weblog; some people left comments for the post and told me they have NF. I sent a message to them: “I have NF, too. Let’s make friends. “
That was the first step in creating a community for NF people in Iran, the first-ever NF community in the country.
My NF friends and I started an association to support NF people in Iran, and now, about 800 members have signed up. Every year during May, we try to share NF awareness. Unfortunately, no clinical trials are being done in Iran. I just search articles and news about NF, translate them into Persian, and share them. That is the only thing I can do for my friends.
When I was diagnosed with NF, despite all the bad news that I heard about my disease, I never gave up. I lived my life and helped others who were like me.
I am a teacher. I live with my parents. I love going to the nature and listening to the birds singing and water flowing.
Favorite Song
I’m Alive by Celine Dion
Dream Superpower
Flying
Favorite Food
Iranian food & kebab
