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Alopecia Universalis: Causes, Stages & Treatment Options

When most people think of hair loss, they will usually think of people who go bald or lose the hair on their heads. However, for 1 in 4,000 people [1], hair loss can actually be experienced all over the body.

If you have started to experience hair loss in more areas than just your scalp, there is a high chance you’re suffering from a condition known as alopecia universalis.

In this article, we’ll be discussing what alopecia universalis is, what the different stages of this condition are, and what treatment options are available to those who are suffering from it.

What is alopecia universalis?

Unlike alopecia areata and alopecia totalis, which only affect the scalp, alopecia universalis (AU) is a condition that causes complete hair loss on all parts of the body.

alopecia areata vs alopecia universalis

Left: patient with alopecia areata. Right: patient with alopecia universalis.

Known as a type of alopecia areata, alopecia universalis can result in hair loss on your legs, pubic area, arms, underarms, eyelashes, as well as eyebrow hair loss and scalp hair loss.

Alopecia areata is much more common, affecting around 2% of people globally. Alopecia universalis is thought to only affect around 0.03% [2].

Although the causes of alopecia universalis are unknown, and studies on the topic are somewhat limited, alopecia universalis is thought to be an autoimmune condition.

Symptoms and stages of alopecia universalis

People who suffer from alopecia universalis may start by noticing some of the symptoms common with alopecia areata, like experiencing small patches of hair loss.

However, this will quickly turn into more severe hair loss around the body which can come on suddenly. These larger bald spots will then continue to spread until there is no hair left at all on the body.

If you think you are experiencing the symptoms of alopecia universalis, the easiest way to get diagnosed is through a physical exam or medical test by a healthcare professional or dermatologist.

Unfortunately, AU isn’t a condition that you can prevent so, even if you are able to pick up on the symptoms early on, the chances of you being able to completely stop the condition from spreading aren’t very high.

However, speaking to a healthcare professional or dermatologist early on can help you to come to terms with the condition better and identify if there is anything you can do.

What causes alopecia universalis?

Alopecia universalis is thought to be an immune system disorder where healthy hair follicles are attacked by the body’s immune system, which makes them fall out and inhibit future hair growth [1].

However, researchers also believe that other factors can contribute to the development of AU, such as genetics and environmental factors.

Genetics

Alopecia universalis is sometimes present from birth. This is known as alopecia universalis congenita. This is a genetic disease that is caused by an inherited hairless gene.

Alopecia universalis congenita may be passed down through autosomal recessive inheritance or autosomal dominant inheritance [3-4]. Hair usually starts to fall out soon after birth with recessive inheritance. If they have dominant inheritance, hair loss can present from childhood onwards.

If someone else in your family already has alopecia universalis, the chances of you developing it are much higher. People who suffer from AU also have a high chance of developing other autoimmune diseases such as thyroid disease [5].

Generally, 50% of people who have autoimmune-related alopecia will start to experience symptoms while they’re a child, and 80% will start to notice the effects by age 40 [6].

Environment

There are studies that suggest the environment can play an important role in the likelihood of someone developing alopecia universalis. For example, one report in the Journal of the American Academy of Dermatology found that identical twins only experience the same alopecia condition about half of the time [7]. The outcome of this study suggests that environmental impacts, as well as genetics and the immune system, can be the key players in causing alopecia AU.

Although the specific environmental factors remain unknown, they’re expected to include other illnesses, allergies, or hormonal influences.

Does stress cause alopecia universalis?

Stress can be an important trigger for many types of temporary hair loss, like telogen effluvium. However, it is not thought to be a trigger for alopecia universalis.

Treatment for alopecia universalis

Unfortunately for the many people who suffer from alopecia universalis, it’s an incurable condition. Not all treatments are successful. However, there are a few courses of treatment that may work, including:

  • Diphenylcyclopropenone – a topical drug that is used to treat patients with alopecia areata and may be able to stop or slow hair loss for alopecia universalis patients.
  • Squaric acid dibutylester – a type of contact allergen that has mild side effects and is usually well-tolerated.
  • Steroids – used to inhibit the body’s immune response and reduce inflammation.
  • Cyclosporine – an immunosuppressive drug.
  • Minoxidil – this common hair growth treatment has been shown to stimulate hair growth in combination with other medications [8].
  • Adalimumab – a TNF inhibitor that works by reducing inflammation, and has helped at least one AU patient recover their hair [9].

alopecia universalis before treatment alopecia universalis after treatment

A patient with AU before and after Adalimumab treatment.

alopecia universalis patient before and after combined treatment

A patient with AU before, during, and after combined immunosuppressant, Minoxidil and corticosteroid treatment.

The most effective treatment for people with alopecia universalis is topical immunotherapy, such as diphencyprone. This drug produces an allergic reaction that can shock the hair follicles into producing hair. However this is thought to only be around 40% effective.

Although the current outlook for AU treatment can look bleak, there are some emerging treatments that show promising results.

According to a report in the Journal of Investigative Dermatology, a man experienced a total regrowth of his hair after using a psoriasis drug [10]. After 8 months of using the drug to treat his psoriasis, his alopecia universalis had reversed.

Similarly, in a report from the Journal of the American Medical Association, a female teenage patient was given topical Ruxolitinib, which is normally used to treat a bone marrow disorder [11]. Over the course of several months, the patient applied the medication to her eyebrow area – which had undergone complete hair loss due to AU – and saw significant hair regrowth.

Are there any complications of AU?

Although alopecia universalis isn’t a life-threatening issue, and often has few additional side effects, it can cause some problems for patients.

When your body is completely free from hair, you’re more at risk of sunburn. You may also get more debris in your eyes due to lack of eyelashes. It’s also easier for germs and bacteria to enter your body due to a lack of nose hair.

In addition, many of those that suffer from AU may also experience mental health issues. If you find your mental health is suffering, there are many alopecia support groups that may help.

Can you get a hair transplant if you have alopecia universalis?

Although some patients with alopecia universalis may see full hair growth after several years [1], this isn’t the case for every patient.

Many typical hair loss medications and treatments, such as hair transplants, are ineffective for patients with alopecia universalis. This is the case for patients who have experienced any kind of autoimmune-related hair loss.

Hair transplants rely on healthy hair growth in other areas of the body. If you have lost all or most of your body hair, it’s impossible to transplant hair from one area to another.

Although this may be disappointing, there are other options to hide your hair loss. This includes wigs, makeup, artificial eyebrows and false eyelashes.

What to do if you have alopecia universalis

Alopecia universalis is a severe type of hair loss. It’s an incurable condition that causes hair to fall out all over the body, rather than just on the scalp.

Although the direct causes and triggers are unknown, alopecia universalis is thought to be an autoimmune condition in which white blood cells attack the hair follicles and cause hair to fall out.

If you think you’re suffering from alopecia universalis, we’d recommend speaking to a medical professional such as your GP or a hair loss specialist. They can discuss potential treatments with you to help restore some or all of your body hair.

Alopecia Universalis: Causes, Stages & Treatment Options, Wimpole Clinic

Sources:

  1. https://rarediseases.info.nih.gov/diseases/614/alopecia-universalis
  2. https://pubmed.ncbi.nlm.nih.gov/31437543/
  3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5551308/
  4. https://www.sciencedirect.com/topics/immunology-and-microbiology/alopecia-universalis
  5. https://onlinelibrary.wiley.com/doi/10.1111/1346-8138.14648
  6. https://dermnetnz.org/topics/alopecia-areata
  7. https://www.jaad.org/article/S0190-9622(09)00143-1/fulltext
  8. https://www.dovepress.com/successful-therapy-of-alopecia-universalis-using-a-combination-of-syst-peer-reviewed-fulltext-article-CCID
  9. https://jamanetwork.com/journals/jamadermatology/fullarticle/1913664
  10. https://www.researchgate.net/publication/263208380_Killing_Two_Birds_with_One_Stone_Oral_Tofacitinib_Reverses_Alopecia_Universalis_in_a_Patient_with_Plaque_Psoriasis
  11. https://jamanetwork.com/journals/jamadermatology/fullarticle/2474311
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