"you never really know if it's going to get any better"
An Indian woman said she felt like she had lost part of her identity due to an autoimmune condition resulting in her skin losing all of its pigment.
Gurdeep Romanay has vitiligo, a condition where pale white patches develop on the skin due to a lack of melanin.
In Gurdeep’s case, it can cause complete depigmentation of the skin.
She said that because of her pale skin, a lot of people did not realise she was Indian, something she said was “really hard”.
Gurdeep first noticed a small white patch on her ankle when she was 10 but doctors did not know what it was.
During her childhood, the patch did not change or spread.
Gurdeep said: “It was only into my late teens when I started to see a lot more pigmentation changing on my arms and my legs.”
She was referred to a dermatologist and was eventually diagnosed with vitiligo, and was told there was no cure.
Throughout her 20s and 30s, the skin condition “spread very rapidly” and when the spots started to appear on Gurdeep’s face she said it was “really hard”.
She also found the unknown hard to deal with.
Gurdeep said: “Unfortunately, vitiligo is one of those conditions where you never really know if it’s going to get any better or worse.”
Now aged 48, Gurdeep has no pigment left.
She added: “A lot of people don’t realise that I’m Indian because they see someone who’s quite pale.
“That makes it really, incredibly hard because I do feel like I’ve lost that part of my identity.”
The Vitiligo Society surveyed more than 700 people and found that sufferers felt insecure and self-conscious as a result of the condition.
Eight in 10 people said vitiligo negatively affected their appearance and two-thirds said they wanted better access to GPs and dermatologists.
Abbie Hurrell, director of The Vitiligo Society, said: “A vitiligo diagnosis should be the start of a journey filled with information and answers to help people come to terms with the mental and physical impact of this condition, yet sadly that is often not the case.
“Too many people are left feeling dismissed and confused after their first chat with their GP.
“There needs to be better understanding among GPs and medical professionals and more support offered at diagnosis so that we can start to address the impact on people’s mental health.
“Public behaviour also needs to change as many people with vitiligo face stares when they go out in public.
“We need to increase awareness and understanding of the condition so that people with vitiligo can live the lives they want.”
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