Until recently Amy Johnson refused to call herself an alopecia sufferer.
The 29-year-old would have argued that she wasn’t ill, not ill like the women undergoing chemotherapy for the cancer she is often assumed to be suffering from.
“That is one of the many challenges faced by people with alopecia. The guilt of feeling terrible about your hair loss. The feelings that you have no right to feel bad. When you correct people and tell them that you don’t have cancer, you have alopecia you feel like you have to apologise.
“However, the emotional and psychological damage of alopecia is all too real and often underestimated – by both GPs and the alopecia sufferers themselves.
“We suffer with the shock of suddenly losing our hair. We suffer with grief, anger and a need for answers which we never get. Because we still do not know precisely why our body does this to us.”
Amy, who is from Bradford but works in Leeds, is calling on the Government to take the plight of alopecia sufferers seriously and to invest money into research about the condition.
She has launched an e-petition which in its first two weeks gained more than 1,500 signatures. She needs 100,000 for it to have a chance of being debated in the House of Commons, and although she knows this is unlikely, Amy is hopeful that it will improve awareness of alopecia.
Amy has set up a Twitter account @hairlesswhisper through which she has met other alopecia sufferers and hopes to set up a support group soon.
She added: “It has been really helpful to meet other people who know exactly what you are going through.”