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Alopecia Totalis: Why It Happens & How It Progresses

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Alopecia Totalis

 

Alopecia totalis is a rare and advanced stage of alopecia aerata that causes total loss of hair on the scalp. The hair loss usually occurs when your body’s immune system attacks hair follicles. The exact alopecia totalis causes are unknown, but stress and genetics are known to play a vital role in developing the condition.

The symptoms of alopecia totalis go beyond hair loss, with some also experiencing scalp discomfort or itching and brittle, pitted nails. While there is no permanent solution for this condition, some treatments can help manage the alopecia totalis symptoms. So let’s learn more about alopecia totalis, what drives it, and the treatment options available to us.   

What is alopecia totalis?

Alopecia totalis is the advanced stage of alopecia areata. What it basically means is that when alopecia areata moves to the point where you suffer from complete hair loss across the entire scalp, you are in the alopecia totalis stage. Around 5-10% of people with alopecia areata will progress to totalis.

It is worth understanding how different the two conditions are.

Condition

Its Impact

Alopecia Areata

Patchy hair loss on your scalp

Alopecia Totalis

Complete hair loss across your entire scalp

Alopecia Universalis

Hair loss across your entire body, including eyebrows and eyelashes


The condition is extremely rare. According to estimates, only about 0.03% and 0.08% of the global population are impacted by alopecia totalis. You are likely to see teenagers and young adults suffer from it, though it can occur at any age. It can happen to both men and women in equal numbers.

What are the causes of alopecia totalis?

The exact reason why some people have to go through alopecia totalis is not totally understood. But medical practitioners agree that it is an autoimmune condition, in which the immune system attacks itself.

Those suffering from the condition often feel their body is turning against them. It can be quite disorienting. Here is what is better understood about alopecia totalis:

  • Autoimmune Response - Your immune system has mistakenly identified your hair follicles as a threat and has begun to attack them. This prevents healthy hair follicles from growing. Over time, this causes your scalp to completely lose its hair. 
  • Genetics - Research indicates that nearly 20% of people who develop alopecia totalis have a family history of alopecia areata. This is a clear indicator that there is an element of genetics. 
  • Triggers - People who are genetically predisposed to this condition are more vulnerable when other triggers are also present, such as infections, illnesses, specific medications and stress.
  • Existing Autoimmune Conditions - Patients with autoimmune conditions such as thyroid disorders or type 1 diabetes are at higher risk of developing alopecia totalis, as an already compromised immune system can become dysregulated in other areas.

It is important to remember that alopecia totalis is not contagious. It is just your immune system fighting against you due to a genetic predisposition.

What are the stages of alopecia totalis?

Alopecia totalis doesn’t just come out of nowhere. In nearly all cases, it starts with alopecia areata, in which small, round bald patches gradually develop on your scalp. Soon enough, they increase in size and number. In most cases, this development is rapid, with full hair loss happening within a year. However, timelines of its progress may vary from person to person. Alopecia totalis stages broadly follow three phases:

Initial phase 

You notice small, round ball patches on your scalp. You are likely to experience some scalp discomfort, such as mild itching or tingling.

Progression phase 

You notice more bald patches appearing on the scalp. It all depends on the individual and their stressors on how prevalent the hair loss will be. 

Total hair loss 

This is the last stage of alopecia totalis. In this phase, baldness will engulf your entire scalp.


The difficulty in managing alopecia totalis lies in its unpredictability. There are cases where it takes a few months to develop, while others unfold in weeks. The reasons for its unpredictability are still not known. And the uncertainty as to how it will progress makes it a difficult condition to live with. 

For some patients, the changes are not just about their scalp. It reflects how their autoimmune system is behaving. They may manifest brittle or pitted nails, which are sometimes associated with alopecia totalis.

How is alopecia totalis diagnosed?

There is no single test to confirm if you have alopecia totalis. That is why a mix of clinical observation, medical history, and laboratory investigation is needed.

Generally, a dermatologist is likely to conduct a physical examination of your scalp to learn about hair loss patterns. They would also review your personal and family medical history for any genetic predisposition.

In a few cases, you could even be asked to undergo a scalp biopsy to rule out other conditions. Furthermore, blood tests can be taken to rule out autoimmune or thyroid disorders that could contribute to hair loss. 

What are the alopecia totalis treatment options?

Unfortunately, a cure for alopecia totalis has not been found. However, there is some encouraging news. There are treatments that can promote hair growth in some people, and understanding what is available to them can show a way forward.

Treatment

How it works

Key Notes

Topical immunotherapy 

Apply diphenylcyclopropenone (DPCP) on the scalp to induce a mild allergic reaction to reduce immune attack on hair follicles


Weekly doses. It may cause itching or irritation

Corticosteroids 

Suppresses the immune system to stop hair follicle damage

Injections or oral medicine, based on severity

Minoxidil

Boosts blood flow and stimulates follicle activity

Used as a supportive treatment

JAK Inhibitors 

Blocks immune signals from attacking hair follicles

Promising developments,  in particular, tofacitinib.

70% of patients saw regrowth within 3 months

Ultraviolet light therapy 

PUVA therapy to slow the immune response

Results remain inconsistent, effectiveness still debatable 


Does a hair transplant treat alopecia totalis?

No, a hair transplant treatment does not work for alopecia totalis. After all, it does not address the root problem of your hair loss. 

Remember, alopecia totalis is an autoimmune disease that specifically targets your scalp’s hair follicles. When you transplant hair follicles onto your scalp, you are essentially exposing them to a hostile environment, one which has already witnessed considerable hair loss. This would basically mean that your transplanted hair would shed, just as your original hair. 

The reality of alopecia totalis recovery

You can recover from alopecia totalis, but there is no guarantee of permanent recovery. Sometimes, without any reason, your immune system simply stops attacking your hair follicles and allows them to regrow spontaneously. This is the exception, not the rule.

The simple truth is, if alopecia totalis persists for over two years, the chances of spontaneous regrowth drop considerably. If regrowth were to happen, after a long period of alopecia totalis, it would be partial rather than complete.

For many, the available treatments do not provide the results they are looking for. Instead, they seek comfort by covering their heads with wigs or by shielding them with hats or shawls. Some simply embrace this change. All of these paths chosen are valid.

The emotional weight of alopecia totalis

When you lose hair so suddenly, unpredictably and rapidly, you lose a part of your identity. It carries an emotional weight that can rarely be understood. People with alopecia totalis often describe a sense of isolation, sadness, shame, anger and fear. This is a completely natural response. At these times, you must acknowledge these feelings rather than pushing them aside.

Visiting a counsellor and seeking therapy can be enormously helpful. So can connecting with others who understand the experience. 

Understanding the impact of alopecia totalis in women

For women who have suffered from alopecia totalis, the grief is not just about losing their hair, but a version of themselves. There is a shift in relationships as they withdraw from those closest to them. Finding it difficult to explain something that is difficult to understand. Ironic, as the condition can be just as invisible as autoimmune diseases are, yet its impact on a woman’s sense of self is clearly visible.

Unfortunately, alopecia totalis doesn’t have a clear timeline for when it will attack or when it will spontaneously leave. Regrowth is uncertain, and there is no cure in sight, and that is what takes the heaviest toll, going beyond physical appearances. 

There are smarter ways to tackle hair concerns without relying on harsh chemicals. You can consider alternatives like Traya’s Ultimate Hair Supplements Combo, a blend of Ayurveda, Allopathy, and Nutrition that gives your hair support from within. With 20+ herbs and essential nutrients, it helps correct internal imbalances and encourages healthier hair growth.

The impact of alopecia totalis is so complete that it can feel deeply personal. If you are suffering from it, know that you aren’t alone. With treatment options continuing to evolve, you can choose to live your life and completely rewrite your own story.

Frequently Asked Questions

1. Is alopecia totalis the same as alopecia areata? 

No, both conditions are separate. Alopecia areata results in patchy hair loss; alopecia totalis results in the loss of hair throughout your scalp; it is an advanced form of alopecia areata. 

2. Is alopecia totalis hereditary? 

Though people with alopecia totalis are genetically predisposed, genes are not the primary reason they suffer from this condition. There is a combination of several conditions that will likely trigger, which include stress, illness and other autoimmune diseases.

3. Can alopecia totalis resolve on its own? 

Yes, there are some cases where it resolves on its own. This is especially seen among younger patients and children. However, the chances of spontaneous remission drastically reduce the longer the condition persists. 

4. Is there an involvement of DHT in alopecia totalis? 

No, there is no form of involvement of DHT in alopecia totalis. As the condition is autoimmune, DHT sensitivity does not affect it.

5. At what age does alopecia totalis typically begin? 

Even though alopecia totalis can happen at any age, it is most commonly seen in teenagers or young adults. You are likely to see it in people under 30.

6. Can children develop alopecia totalis? 

Yes, the condition is rare among children, but that doesn’t mean it’s unheard of. However, there is encouraging news, as children with alopecia totalis are more likely to recover spontaneously as compared to adults. 

7. Can alopecia totalis spread from person to person? 

No, alopecia totalis is not a contagious disease. It is an autoimmune disease owing to genetic predisposition.

References:

  1. https://www.ncbi.nlm.nih.gov/books/NBK563225/ 
  2. https://www.ncbi.nlm.nih.gov/books/NBK563225/ 
  3. https://www.cureus.com/articles/336838-efficacy-of-oral-tofacitinib-in-alopecia-areata-alopecia-totalis-and-alopecia-universalis#!/ 
  4. https://pmc.ncbi.nlm.nih.gov/articles/PMC12454744/
  5. https://ijdvl.com/efficacy-and-safety-of-tofacitinib-in-patients-with-total-and-universal-alopecia-a-retrospective-evaluation-of-69-patients/
  6. https://www.health.harvard.edu/blog/what-is-alopecia-areata-and-how-is-it-managed-202204282732#

 

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