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Dealing with Alopecia Totalis and Universalis

Some men catch a glimpse of what they think is a receding hairline and freak out. Some women are distressed to see a widening centre-part when they look in the mirror. For alopecia totalis and universalis sufferers, dealing with complete baldness is a whole other playing field.

Alopecia totalis and universalis are variations of alopecia areata at its most extreme. Alopecia areata is characterised by patchy hair loss that can, in 70% of cases, correct itself
or if not has a good chance of being reversed with hair loss treatments. Alopecia totalis on the other hand results in the total loss of scalp hair and universalis extends to total body hair loss, and there is no cure.

Areas of the Head and Body Affected By Alopecia Areata

Areas of the Head and Body Affected By Alopecia Areata, Alopecia Totalis and Alopecia Universalis

It is not known why a person will suffer just a few bald patches and another experience total hair loss but all three conditions are believed to be the result of the same mechanism. It’s understood that totalis and universalis are forms of an autoimmune disorder which causes the immune system to attack the hair follicles. They may originate from alopecia areata and slowly develop to totalis or universalis, or they might come on suddenly and hair may rapidly be lost over a period of days or weeks.

Hair loss can be embarrassing at best, but to lose your hair so abruptly and without warning can be shocking and frightening. Unlike most types of hair loss, totalis and universalis sufferers don’t have time to register what’s going on and with no other physical symptoms, it can be downright confusing.

According to statistics, about 1 in every 125,000 men and 1 in every 250,000 women have alopecia totalis or universalis. Most sufferers are children and young adults under the age of 40, though it can affect people of all ages.

It’s not that the sufferers’ hair follicles can’t grow hair, it’s that for some unknown reason they choose not to. Sometimes the hair can grow back on its own but recovery rates are lower than that of alopecia areata. In most cases, the chances of recovery are small but there have been some cases of complete restoration as well.

WigThere are ways to treat alopecia areata, although nothing is completely guaranteed work. However, as far as the more advanced forms of alopecia like totalis and universalis are concerned, no treatments have proved effective. There are companies around which claim to be able to be able to treat totalis and universalis, but a high degree of scepticism is cautioned. If they truly worked, the whole world would know about them. Just don’t get your hopes up.

Wigs and permanent makeup can be a good option for people with totalis and universalis. Wigs have been used by chemotherapy patients for years but these days, celebrities and everyday people wear them to change their look. They can be made to measure, cut, thinned and styled to suit you. Permanent makeup is also used by the millions but it can give renewed confidence to those with alopecia totalis or universalis. It’s a smear-free, time-saving means to regain structure, depth and expression and even just a little lash enhancement can define the eyes.

There are support groups, hair loss charities and communities dedicated to those dealing with alopecia totalis and universalis. Sometimes sharing your story and getting things off your chest can be an overwhelming relief. Other times, hearing someone else’s trials and triumphs are motivation to keep living life to the full. It can be hard to believe at first, but there is life after hair and there is always someone willing to lend an ear or shoulder during your pains, struggles and triumphs.

For more information, contact the Belgravia Centre on 020 7730 6666 or send an email.

Useful Sites:
Princess Charlotte Alopecia Foundation
Women’s Hair Loss Project
Bald Girls Do Lunch
Alopecia World
Locks of Love
Alopecia UK


The Belgravia CentreThe Belgravia Centre

The Belgravia Centre is the leader in hair loss treatment in the UK, with two clinics based in Central London. If you are worried about hair loss you can arrange a free consultation with a hair loss expert or complete our Online Consultation Form from anywhere in the UK or the rest of the world. View our Hair Loss Success Stories, which are the largest collection of such success stories in the world and demonstrate the levels of success that so many of Belgravia’s patients achieve. You can also phone 020 7730 6666 any time for our hair loss helpline or to arrange a free consultation.


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10 Comments

12th December, 2012 at 2:20 pm

bhanu

i'm 17 years old and having alopecia totalis to which i m not having any cure and hairs aswell. please help me ASAP! !

13th December, 2012 at 12:08 pm

Jenna

Hi Bhanu, Thank you for your enquiry. The best thing to do would be to visit the centre for a tricho-check so we can recommend the best form of treatment for you. If it is not possible for you to visit the London centre you can fill out our on-line diagnostic form here http://www.belgraviacentre.com/online_diagnosis/ We look forward to hearing from you soon.

30th December, 2015 at 5:23 am

Nannette

I have been totally bald since I was 18, I am now 53. I wear a wig, II swim in it, sleep in it if I want, and everything else. It sometimes gets tossed off, because it's warm, and sometimes just because. I am saving for perminate make up, that would just make me feel so good with or with out hair, I'm not a big makeup wearer but I would like to have eyebrows and at least some color where eyelashes are or should be. I can pretty much cope with it I always have, We used to snowmobile all winter and boat all summer, I'm a swimmer and avid gardener, I also snorkel and my son is a scuba instructor and I'm learning to dive, for now with hair or a do rag for diving. My biggest problem wigs they are warm. It would be great to have hair but that will never happen, and I don't really mind it, I think it's hard for a lot of people, it was for me once in a while when I felt down. The only time I really got upset is when my daughter who was in grade school started getting spots falling out, I just hoped that hers would grow back, but she would have coped with it if it did not, she is very strong. If you can get your hair back that is great, but when mine fell out I was in studies and was a test subject, they put me on pills did biopsy after biopsy, till I decided I was fine with no hair, and did not want anymore of that. Did not want my daughter to go though that. all and all there is a life without hair, all is good

10th August, 2016 at 6:44 pm

Jack

I'm 16 and have had alopecia universalis for a year and I couldn't care less, nobody else cares either, it's just life without hair and it's an easy thing to deal with, all you need is confidence and it will be fine

11th August, 2016 at 9:20 am

Sarah Belgravia

Great attitude, Jack! Some people find it harder to deal with than others but it's good to hear such a positive view point.

12th August, 2016 at 5:47 pm

Jack

Yeah my hair on my my head and eyebrows started growing back about 2 months ago, but it's all gone again and I honestly don't give a shit. I'll be honest when it started falling out last March it sucked, it's not easy at the beginning, but I've now realised that I'm lucky something worse didn't happen. Now I don't even remember that I have no hair anywhere because of how little it matters. If anyone is having trouble dealing with hair loss reply to this and I'll talk to you, because if a 16 year old with no hair anywhere can get over it, then anyone can.

6th October, 2016 at 6:02 pm

Brian

I'm 17 years old,and I've had alopecia totalis since I was 5 years old. And it's been rough. People still make stupid rude little jokes and comments about me not having any hair and it makes me so mad and frustrated. I stopped wearing a wig 2 years ago,because I thought it was more work than it was worth (they fall apart from washing and from brushing,and they made me itchy). I just really needed to get that off my chest. And I needed someone to talk to about it who might understand.

7th October, 2016 at 9:09 am

Sarah Belgravia

Hi Brian. Have you tried support groups and online forums tied to Alopecia UK? They are an excellent charity supporting people with various forms of alopecia areata, including alopecia totalis. They are on social media as well as having their own website and they arrange various events so you can meet others dealing with similar hair loss issues too.

7th October, 2016 at 8:00 pm

Brian

I live in Canada,so no I haven't.

10th October, 2016 at 9:23 am

Sarah Belgravia

Hi Brian, they offer online support so you don't have to be from the UK. You could also try the Canadian Alopecia Areata Foundation.

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