Regrowth after Long Term Alopecia Universalis?

[Gotta keep smiling :)]

I was wondering who out there has had long term hair loss. I got alopecia as a teen I had AA so was just bald patches on my head and occasional patches on eye brows, it continued like this for 6-7 years following a cycle of falling out and growing back, very large patches that all ended up merging but eventually grew back and would fall out somewhere else, my hair almost all grew back briefly but then the cycle started again, over the years it has seemed to AT then AU I literally have no hair anywhere now except 1 or 2 strands. I wear wigs, draw on my eye brows, do my make up to look like I still have eyelashes (eyeliner & eyeshadow) and wear false eyelashes a lot too which took me a long time to master but eventually got the hang of it!! It's now so easy I have had almost no hair for a few years now but alopecia of some kind for 20 years, I found losing my eyebrows and lashes worse than my hair because it really alters your whole face. But I just get on with it always have Has anybody had long term hair loss and then it grew back, or long term and it not? I am 33 and would love my own eyelashes again or few sprigs off hair!!!Hahaha

 

[Phenogeneria]

Yes it can all grow back-but do not trust it

Hi

sorry to hear your situation. As a male who lost ALL his hair overnight at age 19 I was rather traumatised by it. However, I found out despite the era the best way forward was to not conceal in any way, nor milk the false story of having chemo etc. I compensated a bit by getting into body-building which meant no male later dared make snide comments at my expense as I was even more intimidating. (I have fluffy little lapdogs by the way and am a big softie).
I found many women were fascinated by the prospect of such a smoothie and I was taken advantage of numerous times, but admit I managed to enjoy it. Interestingly I find women with totalis really attractive but have not had the shrink treat that condition.
I got married to one of those gorgeous women and out of the blue 2 decades later ALL my hair started growing back! I tried really hard to work out what could be responsible but I did not determine it otherwise I would be the richest man on the planet and everyone would be hirsute, maybe overly so (hairy palms?). Interestingly my wife of 18 years found my body hair offensive when it all grew back and I actually had to endure shaving hair off my torso to accommodate her attitude. (I still love her, faults and all). Well just when I figured I'd explained it all to everyone and was enjoying not having dust and sweat in my eyess and having zero stares again I woke to find all my long jet black hair once more on the pillow (etc). Pet hairs have nothing on that.
So in answer, yes it can all grow back but if it does capitalise on it but never trust it. If you can determine the cause of regrowth capitalise on it, so many poor men with male pattern baldness and total unacceptable of the ageing process need the psychologically questionable crutch to their self esteem.
As an aside I can spot any and every prosthetic hair be it a wig, toupee, hair transplant, hair thickening gels etc, eyelashes, eyebrows etc.
I found one of the biggest issues as a big 6'2 200 kilo well proportioned and cut body builder being perceived as a thug or nasty person. I used that to advantage working as a bouncer or minder on occasion but did not get off on that as much as I grew more mature. I am really glad I never had a piercing or tattoo as that would have prevented me eventually progressing a professional career; even though there were obstacles as people do stereotype.
I personally would have zero problem in accepting anyone with or without hair loss and really you have to look for similar in any partner or friend. What does annoy me however, is the sentimentality of the percieved shallow trauma of cancer patients who endure transient hair loss. They grow it all back, albeit sometimes not such quality.
I have huge confidence in my superior streamlined looks.
I also often referred to Duncan Goodhew as my weedy younger brother......my humble personal opinion.
I'm 4 decades on now and await any more regrowths but patience has limits.....

 

[alecto]

Hi Veronica,

How you doing mate? Well im 25 male & it all started when i was 14/15. started off with small patches & nobody hardly noticed then as was covered under long hair.its now more than 10 looong years! though started treatment rightway & had this treatment thrice in bumrungrad,bangkok+mount elizabeth,singapore(once) & all the way with expensive medication. stopped & next full on. last year it just became totalis. no eyebrows & hair now. in a sense relieved now like a free bird. nothing to worry. initially Doctor said due to extraordinary sexual desries/hormones that i had(still do) & led to autoimmune disorder. my personal life from that age till last year was kinda dreadful as always was hiding those side patches(not in middle) with my long hair. was never confident enough to do sth extraordinary that also includes asking out a girl till date. have been asked out though! life was miserable & still a bit. when get invited by social events,dont know what to do! hope things will turn out to be better cause good thing is look like a tough man(even thogh inside im not!) now i wanna do all those things being introvert that couldnt do at that time. maybe i wanna be a kid & do all those funs i missed. & hope, as research said that bald men are extremely good lovers & successful,to work this statement in favor of me in asking out a girl for the very first time. when you dont have anything to loose then give it a best shot & what to worry about? apart from girls issues,most importantly this docs hopes that would make be better soon occupied me all the time be in high school,uni & even at home. at the time of social get-together,events & presentations at work/uni, ive been always in nightmares! You should thank Almighty creator that atleast before 28,you had a normal life.& surely i do till today cause im all healthy (except this but maybe a reason,Almighty knows best) & still appreciate. Hope you have a good one

Alecto

 

[Admin]

Welcome to the forums Alecto

 

[Cherry329]

Hey. I started with alopecia areata at 8 years old. Finally got treatment- cortisone shot injection which helped most of it grow back until I started having children. Oddly, with each child- I have 4, the first trimester the hair would fall out to be totalis. Then sometime during 2nd trimester, it grew in rapidly so that I had just about a full head of pixie length hair by the birth. Once I started weaning the baby, it would fall out again. It's been pretty much gone on my head for years, with a year or more of universalis. Luckily, I'm 55 now and have my eyebrows, tho they are slight, and eye lashes. I too have learned to buy human hair, made for me, wigs. I hate being hot at times, but Whatev. I also learned to fill in my eyebrows. I have gotten them tattooed on every 3 years, which helps, but you have to find someone good. I also go to a gal who does eyelash extensions, which last about a month. I've found people who actually give me a discount due to my medical condition. So, all in all, I've leRned to lived with it. Don't have much choice. Ha. Btw I did try hormones imitating the 2nd trimester and on of pregnancy but I would get so nauseated, I never gave it a good shot. But, it's worth exploring. Also, I now have my hair back on my head, except in the front, where you really need it to get a weave. But, to encourage you, at least it has grown back when in some places, I have had no hair there for 40 years. Finally, I have tried every treatment available- propecia- some help, but not enough. Larisse has helped with eyebrow and eyelashes, but don't use it presently. I did the acid burns, the cortisone injections into scalp and eyebrows, but no treatment was worth the pain or money because of its limited success. Anyhow, that's my medical summary, for what it's worth. Good luck!

 

[Fester]

Im 31 And loss all my hair at age 3. Im a guy. I love not having hair.If it did grow back I would want laser hair removal asap!

 

[rkwilliams]

I don't know if it is possible

My 14 year old son has had AT since he was 1 years old and has never had hair on his head at all, occasionally he will get eyebrows and eyelashes but they seem to fall out as well.

 

[mfarrukh]

Yes

I think it's possible

 

[Jeepchick67]

Growing Eyelashes

Hi, I'm 49 and in August of last year, the day after my 30 year class reunion, all of my hair fell out. It all started with AA in 2007, and now it is AU. I was devastated. I also have Weggener's, which is another auto immune, and when it happened, I assumed it was from the Methotrexate the doctor had me on for that condition. Nope, they actually use that to treat AT and AU.... I'm working on getting the Weggener's into remission, and am hoping that maybe when that is in check, it may grow back....but I realize it may not. I was able to get Latisse approved through my insurance. If you don't know what that is, it is a drop that is used to help grow eyelashes. I was skeptical at first, and didn't want to use it because it is expensive (it will go down once I meet my out of pocket deductible with my insurance). I started using it faithfully one week after I got my eyebrows and eyeliner tattooed on, this was in December. I am happy to say that I am definitely seeing growth, both on my eyelids and eyebrows! I would dip my head in a vat of it if I thought it would work for that too! Anyway, I just wanted to get on here and introduce myself, and hopefully have a group support system to bounce questions off.... I really don't think the doctors know as much as people that are actually afflicted with the issue.... So Happy Friday! Elizabeth

 

[Manav]

Hi

I lost my hair at the age of 8. I alost all my hair within 15 days. it never regrow so far, however I got my eyebrows and eyelashes back after a period of around 1 year. I am currently 16 years old and again started losing eyelashes. Is there anybody who recovered fully from Alopacia Totalis.

 

[JuliiLautert]

Hi, I lost my hair when I just had turn 4 years old on ONE DAY, at that age I wasn't sure of what was going on but it was really bad for my parents no knowing what was going on with me. they expend every penny they had on treatments from natural stuff to the best doctors and nothing... like everyone says it grows while you are doing the treatment but not much and then goes away and you have to deal with the consequences of the treatment like at some point I was on steroids and I got really obese which was going on the direction of more illnesses. so at my age of 14 years old I decide to stop any kind of treatment on my own and told my parents that I was going to be ok the way I was, because this is only affecting my cosmetics and I could fixed it with a wig and I should complain when there is people out there fighting worst things like cancer and others some no knowing if they are going to even wake up the next morning so base on those thing I AM TOTALLY FINE so far I'm 26 years old had boyfriends that knew my situation and they didn't see any problem now I'm married and my husband loves me just the way I am... about 6 years ago I was going to school for dental assistant one of the classes was with 3 other careers on the health field as well and adults were making rumors about the fact that I had a wig that got me so mad and I stand up in front of 50 people and for the first time I talked openly to others about my situation with ALOPECIA AREATA UNIVERSALIS that gave me so much strong to go and talk about it freely when some one asks and made a huge change on my personal life and I think it helps the way others think as well to not talk with out knowing what others are going thru...
One of the doctors I saw said that when you have AAU you shouldn't have anything grow on its own and if this ever happen means your chances of your hair coming back will be really high but this happens on its own with out any notice he told me it also can happen after 35 years old when your body has actually finish any kind of developing of any manner.
I don't tell this story to any one to feel bad I talk about so others feel better, feel that they are not alone and that there is people on really bad situations out there and that beauty is not how you look... one of my friends is experiencing Alopecia now and is on a really hurtful situation and I shared my story with her from beginning to now and she said it did made her change her way too see things your hair is just vanity.!!! all we can do is love are self's the way we are and if our hair grows back great if not at least we know that we can have a great live with out as well. ALWAYS REMEMBER THAT THERE IS PEOPLE OUT THERE ON A WORST SITUATION FIGHTING FOR THERE LIVES "WE ARE FINE AND HEALTHY" with love someone that is being living with AAU for 22 years of her 26 years of life!

 

[Cambodia]

I have alopecia totalis around 6 years now, and I have treatment that can help me to keep my hair . I knew how it feel when we have this disease. Anyway I'm free if you want to ask how to treat.