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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.

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10 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.

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