Alopecia universalis: complete hair loss explained, with treatment and support options

Alopecia is a general term for hair loss. The British Association of Dermatologists (BAD) explains that alopecia areata is a common condition of non-scarring hair loss that can occur at any age and usually causes small, coin-sized, round patches of baldness on the scalp. In some people larger areas are affected and occasionally it involves the whole scalp, called alopecia totalis, or the entire body, face and scalp, called alopecia universalis.

In alopecia universalis, therefore, there is loss of scalp hair and also of eyebrows, eyelashes and body hair. The BAD notes that alopecia areata can affect hair on other parts of the body such as the beard, eyebrows, eyelashes and body, and that nails can also be affected in some people, for example with small pits or brittleness.

It can affect all genders and occurs in both children and adults. It is not possible to predict how much hair loss alopecia areata will cause for any individual, and that includes whether a person will progress to universalis.

The BAD says hair loss in this condition is caused by inflammation of the hair follicle. Studies show that the immune system mistakenly attacks the follicle, stopping it from growing hair. The exact reason is not fully understood. There are theories about triggers, including previous infections and stress, but it has been impossible to identify such triggers in many people, so a link may be coincidental.

Alopecia areata is an autoimmune condition and has been linked to other conditions such as thyroid disease, vitiligo and type 1 diabetes, and to atopic conditions such as eczema, hay fever and asthma. The BAD says there is a genetic predisposition: in about 2 out of 10 people with alopecia areata there is a family history of the condition. If you have symptoms other than hair loss, mention them to your healthcare professional, who may suggest further tests.

The BAD says the condition is normally diagnosed following assessment by your doctor, most patients do not require tests to confirm the diagnosis, and a scalp biopsy may be considered if the diagnosis is uncertain. The NHS says that a GP may be able to tell what is causing hair loss by looking at your hair, and advises seeing a GP to get an idea about the cause before going to a commercial hair clinic.

Hairs called exclamation mark hairs, short and tapered, may be seen at the edge of a patch, according to the BAD, and some people notice itching, burning or tingling in the affected area before or after hair loss. Dry, sore eyes can follow loss of eyelashes in dry or windy weather.

There is currently no cure. The BAD says that, depending on the extent of hair loss at the start, for 4 out of 5 affected people with alopecia areata complete regrowth will occur within 1 year without treatment, but that further episodes are common. Those with more than half the hair lost at the beginning, or with complete hair loss at any stage, have only about a 1 in 10 chance of full recovery. The chances of regrowth are lower in young children, people with a family history of alopecia areata or other autoimmune conditions, those with hair loss affecting the hairline at the back of the scalp and those with nail disease.

For alopecia universalis in particular the BAD says the likelihood of total regrowth is less without treatment. Hair may regrow even after years, and some people have spontaneous regrowth, but this cannot be guaranteed. Treatment aims to help with hair loss and its effects, and none can alter the overall course of the disease.

The BAD describes a range of treatments, with the choice depending on severity. For extensive disease such as universalis, topical and injection treatments are less likely to be practical, and systemic treatments are considered.

The NHS says losing hair can be upsetting, that your GP may be able to help you get counselling, and that joining a support group or speaking to others online may help. It points to the Alopecia UK website for a support group near you. The BAD says Alopecia UK and the BAD created a charter for best practice for NHS wig provision, advocating that all patients with alopecia who need a wig are offered at least two acrylic wigs a year, though provision varies across the UK.

Practical points from the BAD include protecting the scalp from sunlight with sun block or a hat, being careful of knocks without the scalp's protective hair, using artificial eyelashes, eyebrow pencils or microblading around the eyes, and avoiding tension on hair extensions to prevent traction alopecia. Some people find that shaving off any remaining hair is a good solution.

On the NHS, care starts with a GP and, for severe or extensive disease, referral to a dermatology department. Access to newer medicines such as JAK inhibitors depends on NHS funding decisions, which the BAD notes differ between medicines. Private dermatology allows consultation sooner and prescription of unfunded medicines, though the same safety monitoring applies. Whichever route you use, ask about the evidence for any product sold directly to consumers, since the BAD notes limited evidence for alternative therapies.