Alopecia 'is more than just the hair loss'

Lottie has had alopecia since she was three-years-old

The mother of a young girl who started losing her hair at the age of three wants greater awareness around the condition known as alopecia.

Vicky, from Headley Park, in Bristol, started to notice her daughter was losing small patches of hair around the time she started at nursery.

Lottie is now 10-years-old and the family are trying to help her prepare for secondary school.

Vicky said that as her daughter moves into this new stage they would like to see more understanding from people.

Vicky wants to see a better understanding of the condition

“Lots of people don’t know what alopecia is in children,” she said.

“I think as Lottie gets older, it is getting harder for her, image is a lot more important, kids, school that kind of thing.

“She is lucky while she is in her little primary school bubble, they have always known her with different hair, so no-one looks at her any different, it is just Lottie."

Vicky wants both the public and NHS bosses to realise the condition “has bigger implications than just the hair loss”.

“We’re told by different doctors and specialists that it is just beauty, just vanity, so there is no real help available on the NHS, but it is more than that.

“It is deemed as just cosmetic, and I get it, she is healthy, I am absolute grateful for that, but trying to explain that to a 10-year-old is easier said than done."

Vicky said Lottie has good and bad days as she deals with the condition

Thinking back to when she first noticed her daughter was losing her hair, Vicky said: “Lottie was just a normal happy three year old.

“To start with it was just very small patches which we picked up on, that gradually got bigger, but back then it wasn’t much of an issue because they could be covered with hair bows, or things like that.

“As she has got older it has become more of an issue.”

The family consulted with doctors and were referred to a dermatologist before being told Lottie had alopecia.

“It was something I just didn’t know much about,” Vicky said.

“Initially they thought it was potentially linked to separation anxiety from starting nursery, so stress, worry that kind of thing, but as she has gotten older, she is a very anxious little girl, but a lot of that is caused by the hair loss, so it is like a vicious circle.”

'No cure'

Vicky was advised that because Lottie was young, her hair may grow back and was told to use steroid creams.

“She has had extensive blood tests, all came back normal,” Vicky said.

“We were kind of hoping the bloods would show something, so that we could then look at treatments.

“It was almost a disappointment for Lottie… as there is still no reason why her hair is falling out.”

In the last year Lottie has lost a lot more hair and her condition is much more obvious.

“It has fallen out quicker than we have ever seen it,” Vicky said.

Lottie recently tried a hair system, which took six hours to fit, but due to her small size, was forced to remove it after she was left “in agony”.

“It was basically mesh netting added to her hair, almost like a permanent wig,” Vicky said.

“But because of how small she is and how small her head is, compared to the amount of hair on the wig, it was just too painful for her, so she had it for about a week and we had to remove it.”

Vicky said they are now looking into different treatments and human hair wigs as well as raising awareness of the condition.

“There is no real cure for it at the moment," Vicky said.

"Some days she is absolutely fine and she says it is what it is and she will embrace it and other days she will not want to go somewhere because she worries there will be people there that will notice her hair and say something.”