Helen Tuckwood: Living with vitiligo

I first noticed two patches of white skin about 10 years ago, when I was 47 years old. The patches were on the inside top of my thighs, symmetrical to each other. I had just returned from a holiday abroad and the white patches stood out. At first they didn’t really bother me because the patches were hidden, but after a time, when they started to spread, I decided to investigate the cause.

I read about the possible causes on the internet and concluded that it might be vitiligo. I later visited my doctor who confirmed that this diagnosis was correct. 

My doctor explained that there wasn’t really any treatment that could halt the progress of this condition. Light treatment was an option, but it would mean visits to the hospital two or three times a week for phototherapy. I can’t remember what other treatments were offered, but I remember thinking that there was no guarantee they would halt the vitiligo and they may also make me ill.

I was also referred to the clinic that dealt with camouflage creams: here they matched up my skin with an appropriate coloured cream to use to try and hide the white patches. I’ve never really used the creams as they didn’t match my skin: being olive skinned I easily tanned in the sun but, having since stayed out of it as much as possible, my skin colour is now paler than it was when I was assessed and so the creams are now too dark. So I have no treatment for the vitiligo other than using sunscreen, which I can get on prescription. I presently use a tinted sunscreen for my face, which I like, and a sunscreen for my body.

As the vitiligo has grown and spread, so has the effect that it has had on my life. I developed white patches on my face soon after diagnosis. For most of the year I’m told by my friends that it’s not very noticeable, but when I’ve got a tan it stands out more. I don’t tend to worry what people think, but I do have a 13 year old daughter who is very body image conscious and quite concerned that the vitiligo may be hereditary and will affect her at some point.

I no longer like to show my lower legs as I think the large patches of white skin look awful, so I wear trousers. I wear high necked tops to hide my neck and always wear long sleeves or cardigans to hide my arms, which also doubles as protection from the sun. I prefer this as I hate wearing sun cream, which is sticky and stains my clothes.

I’m always worried about getting burnt by being out in the sun for too long; I’m worried that if I do get burnt this will lead to skin cancer. I don’t think that many people understand vitiligo or realise the implications that being out in the sun unprotected might have on my health.

Vitiligo has affected my self-confidence as I now hate looking at myself or going out to parties/functions. I also worry that my immune system may start to attack some other part of my body. Do other patients with vitiligo feel like this? My doctor has never discussed this with me, or whether I should be looking out for signs of other illnesses. I think it would have been helpful to have had a regular follow-up appointment for my vitiligo, like I have my annual thyroid check. This could have been used to check my skin for any melanomas, monitor my wellbeing, and discuss any new treatments.

Helen Tuckwood is a 57 year old mother of three who lives in Nottinghamshire with her husband.

Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: None.

Read this Practice Pointer: An approach to hypopigmentation