Without a cure, Amy from Johannesburg, South Africa, revealed the diagnoses in February felt like a death sentence.
Her academic study and her social life have been affected as her grades have dropped and her personal relationships suffered as a result of the intense pain.
The desperate young woman is hoping to raise awareness and find a cure before it ruins her life completely.
She said: “When I first found out what was wrong with me I was devastated to know that there is no cure for this condition and I felt like my life was over because I’m so young.
“I can see why it’s called the suicide disease. Sometimes I wake up and I think ‘I hate my life’.
“It has almost taken over my life in a sense, because when it’s really bad I cannot function.”
Amy admitted the hardest thing was that before she was diagnosed many people thought she was lying.