What happens when Frontal Fibrosing Alopecia goes undiagnosed

What happens when Frontal Fibrosing Alopecia goes undiagnosed

Lesley Rutter lives in Newcastle, around 10 years ago, at the age of 40, she began to notice severe hair shedding. The front of her hair began to be itchy, her hair follicles became raised & inflamed, and her hairline began to recede away.

She went to the doctor, and he told her it was just stress related,, and it would go away on its own.
She returned to various doctors over a period of six years, where she was repeatedly sent away and told that it was just because of stress.
She was left undiagnosed, not knowing where to turn or what she could do to treat her condition. She had bouts of severe shedding, including loss of eyebrows and lashes, which means her eyes are constantly itchy.

Eventually, a nurse noticed that her confidence was being severely affected, and that this was having an impact on her life, and encouraged her to advocate for herself and demand to be referred for treatment. This led to her being sent to a dermatologist, who finally diagnosed her with FFA. By this time, however, she had lost around two inches of her hairline, and was shocked to discover that this would not be reversible.

She now has a treatment plan, and has made connections with others, who can understand what she is going through, which she says has made a huge difference.

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