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Alopecia sufferer forms national body, says support is lacking for the disease

Kiwi alopecia sufferers say they aren't getting enough support but one woman is trying to help.

It is an auto immune condition that is often disguised with wigs, hats and bandanas. But underneath, the emotional toll of this disease isn’t as easy to hide.

By definition, alopecia areata is when the body’s immune system starts to attacks its own cells – specifically the hair follicles, resulting in patchy hair loss. There are two types, alopecia totalis is where the hair on the head falls out, and alopecia universalis is when hair falls out from the whole body. 

Although it’s unclear how many alopecians are in New Zealand, the Ministry of Health say its records show 621 reached out for help in the last year.

But one alopecian says the current help provided isn’t good enough, and has taken it into her own hands to form a national body.

“When you go to the doctors these days, you get nothing,” says Nicola Topping.

She’s been living with alopecia for seven years, and after spending hundreds of dollars on regrowth treatments, she realised the most important thing she needed from the start was support.

“Our goal is to set up pamphlets to be given out by the doctors and hairdressers so they have a support network to go to.”

It’s a move being encouraged by leading biomedical scientist, Raissa Sidhu, who has worked with alopecians for six years.

Alopecia can occur at any age. There are two types, alopecia totalis which is where the hair can fall out in patches on the scalp, or alopecia universalis, which causes hair loss of the entire body.

“In one word it's quite distressing for them. What's quite concerning is as a society we're very built on how we look and how we appear," Ms Sidhu said.

"If you have a small patch, you can cover it up but if it's a big patch it does start to effect interpersonal relationships, whether they go outside, whether they choose to you know, might not attend the social gathering because people are going to be looking at me and I'm going to be feeling subconscious about it."

While superficial hair loss can be disguised, the mental effects can take its toll later on down the line if not looked after.

“It does have flow on effects later on down the line, they'll feel self-esteem go down, self-confidence,” Ms Sidhu says.

The Government provides wig subsidies for adults and children, whether they’re experiencing temporary or permanent hair loss but some alopecians think it’s not enough, and that they should be entitled to free counselling.

Ms Topping says she is excited for the national body to be formed, so when people are initially diagnosed they have somewhere to access information.

She says they’re planning a conference for the community to be held in Palmerston North next year with a Facebook group, Alopecia Manawatu Whanganui, already set up.

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