Truths People with Rare Diseases wish others understood
- You don’t have to look sick to be sick.
- It’s lonely, we’d love a friend.
- Just because you’ve never heard of a condition doesn’t mean it not serious.
- Just because I’m smiling doesn’t mean I didn’t spend my morning in tears.
- I’m not making it up, I’m terrified.
- We may look “normal” but the pain is real.
- “Benign” doesn’t mean “harmless”.
- You don’t have to get it, you just need to accept it.
- Sometimes even doctors have never heard of our condition.
- It’s not “all in my head”.
- I don’t want pity. I want awareness and an eventual cure.
- I have good days, too. And on these good days, I’m happy. I’m alive, I’m going to live, not just exist.
Member of the press. I would like my message to be a monthly column (350 words) in your newspaper. Each truth could be a small article. I am not a psychologist neither a sociologist. I can present my truth and my feelings.
Awareness about Rare Genetic Disorders, should be on a monthly basis and I ‘m willing to put the work. Are you willing to give me the job?
You could contact me: