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Alopecia Universalis and Alopecia Totalis

UniversalisThere are three main forms of Alopecia. Alopecia Areata is the most common, and hence well-known, condition, resulting in sudden, patchy hair loss across the scalp. Although large areas of the scalp can be affected, it rarely results in total baldness. The other two are Alopecia Totalis and Alopecia Universalis. These result in total loss of the hair on the scalp, and can affect other body hair as well, depending on which condition you have.

Alopecia Totalis

Alopecia Totalis is an autoimmune disorder which effectively turns your own immune system against your hair follicles. It results in total hair loss on the scalp, and can affect eyebrows and eyelashes as well, but this is the extent of the condition. It does not cause thinning or shedding of any other form of body hair. However, Alopecia Totalis can affect nails as well as hair, causing them to become thin, brittle and ridged.

Beyond hair loss, Alopecia Totalis has no physical side effects. It does not induce pain or sickness and the quality of life for sufferers is generally not affected, except by the psychological implications that accompany any form of hair loss. The condition is not contagious, but is thought to have a genetic influence, so there is an increased chance that sons and daughters could face the same issues.

The majority of people with Alopecia Totalis tend to experience it before reaching 40 years of age, with about twice as many men as women suffering from the condition.  It is not known what triggers Alopecia Totalis. Although it is thought to be genetically programmed, there is evidence that long-term chronic stress or a sudden shock can instigate the condition.

Alopecia Totalis has been known to cease on its own, although this is rare and many people prefer to seek treatment. Treatment usually focuses on a course of immunosuppressants, which work at calming the immune system to prevent it attacking the hair follicle. Side effects can be severe.

Alopecia Universalis

Alopecia Universalis is the rarest, and most severe, of all the forms of Alopecia. It results in total loss of hair across the scalp and body and can also damage and distort nails.

Sufferers of Alopecia Universalis have a genetic mutation in their chromosomes. The condition is something that is present from birth, although may not present itself until later on in life. It is difficult to treat, although some sufferers do spontaneously have hair grow back, even years after the onset of the condition.

The most effective treatment is Topical Immunotherapy, which creates an allergic reaction on the skin of affected areas to shock the hair follicles into production. Unfortunately, the treatment needs to be sustainable for hair growth to continue and the success rate is around 40%.

Seeking treatment

The Belgravia Clinic offers a personalised treatment plan for the early stages of Alopecia Areata, which can prove extremely successful depending on the severity of the condition. We are unable to advise on hair loss across the body, and recommend consulting your GP if you suspect you may be suffering from Alopecia Totalis or Alopecia Universalis. We also have a dedicated page where you can find out more about the current and potential treatments for Alopecia Totalis and Universalis.

25 Comments

14th October, 2015 at 1:46 pm

ABHISHEK

Alopecia Universalis i am loss totalis hair in 4 years

14th October, 2015 at 3:11 pm

Sarah Belgravia

Hi Abhishek, I'm afraid there are currently no truly effective ways of treating alopecia universalis. You can find out more about the existing treatment options here, but this is not something we are able to treat so we recommend you speak to your doctor or dermatologist if you are interested in trying any of these.

12th January, 2016 at 8:23 pm

Stephanie Hunt

I have alopecia totalis x 9 years. Partially grew back after topical treatment during 4th year but fell out completely after a few months. I am 50 years old female. Have tried to find support group to no avail. Live in Tucson AZ where temps are in mid 90s to 100s most of the year so wigs are like wearing a winter hat in the summer. My hair used to be my best feature long and thick below the beltline when it suddenly left me over a 4 month period. Have tried topical treatment to no avail and I don't want to continue because it is hardly tolerable very itchy and painful. I wear scarves in public and do counseling to help with grief. 2 percent of population, still haven't met anyone else with this condition and people always assume I have cancer. Sometimes I wish I could just say yes I do because I get tired of explaining because they always say "what is that?". Thank you for the info and allowing me to air my story.

13th January, 2016 at 10:54 am

Sarah Belgravia

Hi Stephanie, we absolutely understand how distressing alopecia totalis can be and thank you for sharing your story.

If you are interested in finding a local support group, the National Alopecia Areata Foundation (NAAF) in America should be able to help you with this. Click this link to visit their website and find out more.

7th May, 2016 at 3:07 am

MAHMUOD YASSIN

Hello my name is Mahmoud Yassin told the 33-year-old I suffer from alopecia disease in the head and beard and eyebrows and eyelashes Is there a cure with you now I'm about to use a treatment called MESOLINE HAIR Do you advise me to use my Thank you

13th May, 2016 at 10:18 am

Sarah Belgravia

Hi Mahmoud, This sounds like Alopecia Totalis which is an autoimmune condition that causes complete hair loss from the scalp and can also lead to a loss of all hair on the head, including brows, lashes and facial hair. Unfortuately although there are various treatments for Alopecia Totalis, none are particularly effective. There are a number of potential treatments in development, of which JAK inhibitors look the most promising so far, so although there may be a reliable treatment available in the future, for now it is unlikely you will see regrowth results from any products.

26th May, 2016 at 8:01 pm

Cheryl

Hi Stephanie, I have had aloepcia universalis for over 10 years. There are certain wigs(I wear human hair-which is covered by my insurance, but wasn't for a long time) that have a lace weave for that air flows more freely. Were these the type of wigs you were wearing? If not, you may want to look at those. I, like you, do not want to stand out and have people wonder if i have cancer. I have also purchased human hair eyebrows. People never know that they are fake. You are not alone.

2nd January, 2017 at 10:51 pm

Alex

I've had alopecia universalis since I was just 18months old. So for the past 18+ years I've experienced first hand a full life of what it means to live with this disease. It may not hurt us physically but mentally and emotionally it's draining. Nothing the stares and the whispers. People just assuming you have cancer. It's sad. So for people who say "it's just hair loss" think about it. Think about the emotional effect it has on us.

15th May, 2017 at 3:45 pm

catherine kilday

I've had alopacia universalis for 34 years and am now 73. For many years I wore expensive custom wigs (they made my head sweat!), then retired from work and now am just plain bald. I have not been sick (barely even a bout of flu) since my hair fell out. I don't know if there is any correlation, but I'd rather be healthy and strong that have hair! Oddly, sine I don't have gray, white or even thin hair, most people think I am about 20 years younger that I actually am. Go figure! To all of you with little or no hair, use it to your advantage...a contemporary look, a busy life, a wide collection of hats, scarves and wigs and you'll be good to go! Cathy

15th May, 2017 at 5:02 pm

Sarah Belgravia

Thanks so much for your positivity and taking the time to leave such an inspirational message, Catherine! We are sure many people will find it helpful and comforting.

3rd July, 2017 at 9:15 am

Israa Yasser

My brother had alopecia for about 3 years,it started with batchy areas in his head but later spread into all his body hair,he now suffers from alopecia universalais for about 2 years and he is 17 years old

10th July, 2017 at 4:12 am

David Robbins

I recently lost all my hair within a month. The small circles finally overtook my body. I feel fine physically so I do not want to put drugs in me that may kill me.

10th July, 2017 at 1:29 pm

Sarah Belgravia

Hi David, there are currently no treatments available for alopecia totalis and alopecia universalis so we would advise you to be wary of any drugs being offered to you. The only drugs we are aware of that have shown any efficacy in this area are certain JAK inhibitors and these are not yet available for prescription as an alopecia areata treatment - they are still in the clinical trial stage. We are pleased to hear that you feel fine otherwise - this hair loss does not cause physical symptoms other than hair loss although often it can sometimes have a negative effect on people's self-esteem or confidence.

21st December, 2017 at 10:46 am

Jemma, London

Hi there, My husband had a bald patch, (the size of a small fingernail) in he's beard area for at least a year, we ignored it as was only visible if he wasn't clean shaven and it didn't really bother him. However after a very stressful time at work he noticed a bald patch appear on the back of he's head, then another. Within 4 weeks he lost all he's head hair, followed by body hair, then his facial hair. This was 18 months ago. My husbands hair has started to grow back, in fact it started to grow back soon after his loss, it stared off as peach fuzz but is now fairly thick, however his scalp a facial hair have grown back white. Of course we are delighted that his hair has grown back at all, but I was wondering if you could advise if anything could be done to promote the return in pigment? It seems a bit odd as quite a bit of his body hair has returned to normal colour.

21st December, 2017 at 11:48 am

Sarah Belgravia

Hi Jemma, this temporary change in pigmentation is absolutely normal and can occur following alopecia areata. It tends to last a couple of hair growth cycles before returning to the original hair colour in the majority of cases.

8th January, 2018 at 10:59 pm

RUTH BRENNAN

Hello, I am 62 and last June 2017 I developed Alopecia Areata. Within 4 months I lost all my hair. I tried the predinsone at high does for 3 weeks in conjunction antihistamine medications over the counter. I had to take those because I also at the same time presented with hives on my scalp. Soon after another month I developed Grovers disease... that is another shin autoimmune disease. I have never been sick, I work out and I'm fit. I don't feel sick. This all happened in a short time and I still can't believe it is me when I look into the mirror. I have an $6000. wig that looks great but with the skin condition, hives it is almost impossible to wear it more than a few hours at a time. I actually hate wearing my wig, hiding behind it. I surprised myself that I am having such a hard time being bald. I feel I have a strong self esteem and self worth. I am more than my hair but I don't feel like myself being bald. When I expose myself to others I see their reaction. pity, are you sick or to put it simply less of my original self. I refused further treatment and decide to see if my hair would grow back. Some has come in white only to fall out, grow in patches and fall out again. Hope, Loss Hope cycle. Baldness something I am trying to accept and become a better person for it. I hope this helps others to know in our way we will find our own best self, I think it takes time.

21st June, 2018 at 2:41 pm

Martina Maguire

Hi my 12 year old granddaughter was born with no hair at all and to this day still has no hair on any part of her head eyes or body. Do you know if her eyesight will be effected later on in life as she has no eye lashes to protect her eyes from the dust outside Much thank

21st June, 2018 at 3:55 pm

Sarah Belgravia

Hi Martina, it sounds as if she has Alopecia Universalis which is an autoimmune disorder so there are certain other autoimmune conditions she may be more prone to, including ones that affect eye health, but whether or not her lack of eyelashes will cause problems is a query for her doctor or dermatologist I'm afraid, it's not something our hair loss specialists can answer.

7th July, 2018 at 6:33 pm

Evelyn Clark

I am nearly 60 years old. I lost all my hair almost 15 years ago but the final straw was the eyelashes and the lack of these is magnified by my spectacles. Every so often I apply false eyelashes but with hot flushes they have come off in embarrassing situations both at work and during family gatherings. My eyes seem to have shrunk in size and often run in all weather conditions. Although I use thick black waterproof eye pencils these come off the minute I get into the pool and I now shun shared public facilities. I have read about eyelash transplants, but I am concerned about the likely risks. I would be grateful for an expert opinion.

9th July, 2018 at 10:06 am

Sarah Belgravia

Hi Evelyn, please see this full response from one of Belgravia's specialists. We hope this is helpful.

1st August, 2018 at 5:11 pm

Bald spots and Alopecia is there a cure? | | Creative-Alia

[…] some cases, Alopecia Areata can progress to the entire scalp. This is known as Alopecia Totalis. At its most extreme the hair loss can occur across the entire body, including eyebrows. Little […]

1st September, 2018 at 3:13 am

Tariq

I have alopecia areata for 7 years, please can you help me to treatment my condition? What is best way, and what is last sucses treatment? Thank you... Best regards

6th September, 2018 at 2:57 pm

Sarah Belgravia

Hi Tariq, it depends on the type of Alopecia Areata you have. At Belgravia we can treat the form which affects the scalp only - you can find out more on our Alopecia Areata Treatment page. The limited options currently available for the more severe forms explained above, usually through dermatologists or hospitals, do not have any particularly high success rates as yet.

19th September, 2018 at 2:08 am

Charles

Hi, my daughter she is 30 months old now, she started lossing all her hair 6 months ago. All from bald hair, eye lashes and eye brows. Her doctors tried all but don't know what to do, so they recommended we admit her to hospital for further checks, is this ideal or a waste of time and money or is there anything we could look out for in the mean time? I have read other comments and notes this is alopotia totalis. However I just don't know whether we should just wait and see or consider any other recommended treatment. Thank you. Charles

19th September, 2018 at 10:23 am

Sarah Belgravia

Hi Charles, the first step is for her to get a professional diagnosis. This should come from your doctor or, if they have suggested going to hospital for checks, then we would recommend following their advice. There are a number of issues that can cause hair loss, including underlying un-diagnosed medical conditions so it is definitely wise to get your daughter properly checked out. We wish her the best of luck.

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