Alopecia Universalis | Living with hair loss across the body

Alopecia universalis is a form of alopecia areata that causes complete or almost complete hair loss across the scalp, face and body. Eyebrows, eyelashes, facial hair, underarm hair and pubic hair can all be affected. It is an autoimmune condition, which means the immune system mistakenly targets the hair follicles. Why this happens is not fully understood, although genetic and environmental factors are thought to play a part.

It is not something you have brought on yourself.

Alopecia totalis and alopecia universalis are both forms of alopecia areata, but they describe different patterns of hair loss.

They should not be thought of simply as stages that everybody with alopecia will progress through. Someone with alopecia totalis will not necessarily develop alopecia universalis, and eyebrow loss alone does not mean somebody has universalis.

Related: Read our guide to alopecia totalis.

When Your Face Looks Different to You

Eyebrows and eyelashes can feel like small details until they change. You may find yourself looking at photographs, trying to work out what feels different, or wondering whether other people will notice. A wig may help you feel more like yourself while changes around your eyes take longer to get used to. That does not mean your wig is wrong or that you should be coping differently. You can decide which changes you would like help with and which you would rather leave alone. There is no requirement to replace everything you have lost.

Finding an Approach to Eyebrow Loss

If you would like to recreate your eyebrows, there are several options you can explore, including eyebrow pencils, powders and temporary eyebrow transfers. You might prefer a very subtle brow, something close to the shape you had before, a fuller brow, or no eyebrow products at all. If recreating your previous eyebrows feels important to you, an older photograph can be a useful starting point. It can help you remember the shape, thickness and position that once felt familiar. And give yourself time to practise. You do not have to master a completely new morning routine in one go. You may also hear about longer-lasting options such as microblading or cosmetic tattooing. If you are considering these, discuss their suitability with your healthcare professional and use a properly qualified practitioner.

Eyelash Loss and Looking After Your Eyes

Eyelashes and eyebrows do more than change how our faces look. They also help protect the eyes from things such as dust, wind and other airborne particles. If you have lost your eyelashes, glasses or sunglasses can provide an extra barrier when you are outside. If your eyes become persistently dry, sore or irritated, speak to an optometrist, pharmacist or doctor for advice. False eyelashes are another option if you want them. If you have no natural eyelashes, ask for advice about products suitable for applying directly to the eyelid and always follow the manufacturer’s instructions. Stop using anything that causes irritation.

And, importantly, wearing false eyelashes is a choice. If you would rather have one less thing to think about in the morning, that is perfectly reasonable too.

Hair loss from your arms, legs, underarms or pubic area may bring feelings you had not anticipated. You might be completely untroubled by some of these changes and find others surprisingly personal. Occasionally somebody may make a well-meant comment such as, “At least you’ll never have to shave again.” They may be trying to find a positive, but that does not necessarily reflect how losing that hair feels to you.

There can also be a difference between accepting hair loss on your scalp and becoming comfortable with changes elsewhere on your body. These are personal areas, and you do not owe anybody an explanation about where you have or have not lost hair. If changes to your body are affecting intimacy or how you feel about yourself, you may find it helpful to talk to your partner, somebody you trust or your healthcare team.

Small Adjustments That Can Make Everyday Life Easier

Some of the physical effects of widespread hair loss are easy to overlook until you experience them. Sometimes the smallest adjustments are the most useful.

A wig can be one part of how you manage the changes to your appearance, but it does not have to become your whole identity. If you are visiting our Simply Wigs shop for a consultation, bringing a photograph of your previous hairstyle can be helpful if you would like to recreate something familiar. It can also help to tell us how you would like to feel when you look in the mirror, rather than worrying about technical wig terminology. If you normally wear eyebrow make-up or eyebrow transfers, you might want to wear them while trying wigs so you can see the overall effect. Equally, if you normally prefer a bare-faced look, try your wig that way.

With complete hair loss, comfort directly against the scalp can be particularly important. Ask to compare different cap constructions and tell us about any areas of sensitivity. You do not need to arrive knowing the difference between monofilament, lace front and hand-tied wigs.

And please, ask questions as that is what we are here for.

Explore our wigs for alopecia if you would like to see some of the options available for partial or complete hair loss.

Alopecia universalis is a non-scarring form of hair loss, which means the hair follicles are not permanently destroyed and hair can regrow. However, it is difficult to predict if, when or how much hair will return. Spontaneous complete regrowth is less common with extensive forms of alopecia areata such as alopecia totalis and universalis than it is with limited patchy alopecia.

There is currently no cure for alopecia universalis, although treatments can help some people. Please read our ‘Complete guide to Alopecia Types’

If you have alopecia universalis, a dermatologist can discuss the treatments that may be suitable for your individual circumstances. One treatment you may hear about is ritlecitinib, a medicine used for severe alopecia areata.

NICE recommends ritlecitinib as an option for treating severe alopecia areata in people aged 12 years and over. Treatment needs medical assessment and monitoring, and it will not be suitable for everybody. If you are speaking with a dermatologist, tell them about eyebrow and eyelash loss as well as scalp hair loss. These changes can matter just as much to you as the hair on your head. Medical treatment and appearance choices do not have to be one or the other. You can pursue treatment while also wearing a wig, using eyebrow products or choosing whatever helps you feel comfortable now.

Alopecia universalis can sometimes lead to questions from other people and how much you tell them is entirely up to you.

If you would like a simple explanation ready, you could say: “I have alopecia universalis, which causes hair loss across my body.” But,  if you do not want advice or a longer conversation: “I’m not looking for advice, but thank you for asking.”

You might feel comfortable talking openly about alopecia one day and prefer privacy the next. One conversation does not commit you to explaining your hair loss to everybody you meet.

Hearing From People Who Understand

Sometimes the most helpful reassurance comes from somebody who has already experienced something similar. Members of the Simply Wigs community have shared their own experiences of living with alopecia universalis. Their stories will not be identical to yours, but they can make an experience that feels difficult to explain feel a little less lonely. Suggested reading:

Read: I Have Alopecia Universalis

Read: Alopecia Universalis – Ten Years Down the Path

You can also find information, local groups and support through Alopecia UK. If your hair loss is having a significant effect on your wellbeing or everyday life, speak to your GP or another healthcare professional about the support available to you.

Living with alopecia universalis can involve much more than finding something to replace the hair on your head. There may be eyebrows, eyelashes and body hair to adjust to. There may be days when you want to talk about it and days when you would rather nobody mentioned it at all.

At Simply Wigs, we can help with the wig part while you work out everything else in your own way. Whether you are looking for something similar to your previous hairstyle, want to try a completely different look or simply need somebody who understands wigs and hair loss to talk through your options with you, our team is here to help.

This article provides general information and is not a substitute for individual medical advice from your GP or dermatologist.