Alopecia World
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So many questions
I’m confused. OK, so I’m not the sharpest tool in the shed…just wondering if others might be able to provide some insight on a few questions.
I was diagnosed a few years back with AA. Wasn’t my first rodeo with AA, just the most pronounced event. The Doc said that I had 50-75% hair loss on my head. Since then, hair comes & goes with more leaving than growing back lately as I find myself with only a few, sparse areas of hair left on my head. At this point I’d rather that the rest fall out so I could stop shaving. Wondering if there a point where the hair loss is so extensive that the dx changes from patchy AA to AT… or does AT specifically mean that there is absolutely nothing left except for a few stragglers & vellus hairs? Suppose it doesn’t matter much what label you put on it as it is what it is…just curious.
I lost both eyebrows this week. They’ve thinned before but there were typically a few dozen hairs left. Not this time as they’ve all gone except for two that I eventually plucked. My chest and one forearm are almost bear with the notable exception of a dense patch of hair on my arm over an area which bears the scars of an encounter with giant hogweed…interesting as I’ve heard that there are hair ‘restoration’ methods which purposely scar the skin..not that I would recommend hogweed as a method of hair restoration to anyone. I’ve also noticed that almost all the hair on my shins & calves is gone, that the majority of my beard has disappeared and there is a bare patch forming under one underarm. This is all happening rather quickly. Is this how AU begins? Or, is there another form of alopecia in which patches of hair are lost from areas of the body other than the head? Or, is patchy hair loss in AA not confined to the head? Mainly curious as the information that I found on AA, AT and AU is often generic with few specifics.
I’m taking most of this all in stride, at least so far. Guess that’s one of the upsides of having dealt with AA for the past few years. Admittedly, I did let a co-workers comment comparing my appearance to that of Egghead from the Batman series (yeah, I had to look him up too) get under my skin. Apparently, the loss of my eyebrows signaled open season for commentary of this nature as this was the third such remark of the week. I find it amazing that folks feel entitled to make jokes of another’s circumstance. But I digress…
Any insight will be sincerely appreciated. Thanks!
I was diagnosed a few years back with AA. Wasn’t my first rodeo with AA, just the most pronounced event. The Doc said that I had 50-75% hair loss on my head. Since then, hair comes & goes with more leaving than growing back lately as I find myself with only a few, sparse areas of hair left on my head. At this point I’d rather that the rest fall out so I could stop shaving. Wondering if there a point where the hair loss is so extensive that the dx changes from patchy AA to AT… or does AT specifically mean that there is absolutely nothing left except for a few stragglers & vellus hairs? Suppose it doesn’t matter much what label you put on it as it is what it is…just curious.
I lost both eyebrows this week. They’ve thinned before but there were typically a few dozen hairs left. Not this time as they’ve all gone except for two that I eventually plucked. My chest and one forearm are almost bear with the notable exception of a dense patch of hair on my arm over an area which bears the scars of an encounter with giant hogweed…interesting as I’ve heard that there are hair ‘restoration’ methods which purposely scar the skin..not that I would recommend hogweed as a method of hair restoration to anyone. I’ve also noticed that almost all the hair on my shins & calves is gone, that the majority of my beard has disappeared and there is a bare patch forming under one underarm. This is all happening rather quickly. Is this how AU begins? Or, is there another form of alopecia in which patches of hair are lost from areas of the body other than the head? Or, is patchy hair loss in AA not confined to the head? Mainly curious as the information that I found on AA, AT and AU is often generic with few specifics.
I’m taking most of this all in stride, at least so far. Guess that’s one of the upsides of having dealt with AA for the past few years. Admittedly, I did let a co-workers comment comparing my appearance to that of Egghead from the Batman series (yeah, I had to look him up too) get under my skin. Apparently, the loss of my eyebrows signaled open season for commentary of this nature as this was the third such remark of the week. I find it amazing that folks feel entitled to make jokes of another’s circumstance. But I digress…
Any insight will be sincerely appreciated. Thanks!
Replies to This Discussion
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Permalink Reply by Tiffany P on
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Personally i dont think you should let poeple say whatever they want to say to you. now i dont know if because its a bunch of guys you think that it would be manly to just take it but its not professional and frankly its now coming down to harrassment. poeple will walk over you if you let them, and i will be darned if me going to work means i have to deal with some donkeys thinking that they have the right to say whatever they want and think i'm suppose to just take it. You do what feels comfortable but you should not let these people keep it up because then they think its ok. have a great weekend.
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Permalink Reply by Rose Marie' on
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Hi
This is my understanding of the three different forms/stages of Alopecia Areata.
Alopecia Areata is the blanket term used to to differentiate the type of hairloss you have. AA. Alopecia Areata (AA) is also used to indicate that you have patchy hairloss that may come and go.
Alopecia Totalis is when you loose hair from a specific area of the body (usually the scalp) but it could be anywhere, legs, arms, face, etc.
Alopecia Universalis is when you loose all hair from your body, face and scalp. This is the most extensive form of hairloss.
Each of these three forms of alopecia areata are can exhibit themselves in anyone that has alopecia areata. A diagnosis of one or other would be made dependent on your current hairloss, but this (as you know can change) at anytime as regrowth is also a factor for many dealing with alopecia areata.
With regards to your friends. I have found men to be very straightforward in most communication with each other. I would be fairly straightforward with the men that currently think it is open season on you for the laugh factor. Say you don't appreciate it and to stop. For most that will be explanation enough on what is acceptable. If you feel you need to explain more (which is up to you) - think about what you want to say (education wise) and teach them your stuff.
Hope that helps.
Rosy
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I think they are nervous about it. They think it is a big deal and don't know how to deal with their feelings and so they are trying to make light of it.
Perhaps tell them "this is hard for me guys" ... perhaps "I'm not sure what to about this guys -- if any of you are able to find a cure from researching the internet or any doctor friends you have I would appreciate it". I.e Perhaps give them something positive to do (although they might not, but the stating of the "obvious" has been made -- that it is noticeable, and it is a strong change in appearance).
My hair first fell out by my beard. Then I lost hair on my head and body pretty much together, but not as fast as you -- it took months. I wore a full hair piece for about a year or two, and my hair grew back (that was in my early 30's). Went through that the exact same thing again 10 years later (hair out, full hair prosthesis, hair back in, but not quite as full -- perhaps should have waited longer before dropping the prosthesiss). From that point, it started to lave again, and this time it has taken 3 - 4 years to lose 50% of the hair on my head, and also I lose parts of eyebrows at times. This time I'm thinking I'll go bald ... but wear a hair piece on occasion if I want to ... don't know. Am still looking for solutions, and am wondering if it is perhaps viral / fungal / bacterial. See my latest post in the Symptoms and Treatment area.
I like the post another person recently put up -- part of it stating can you accept yourself equally with hair and without hair?
My comments above came partly from a CD / book I've been working through recently called Non Violent Communication by Marshall Rosenberg. Apparently very popular -- there are groups that meet to practice NVC to become more skilled at it, because it is quite different. Part of it is listening beyond what people are saying to the feelings they have and the needs they have.
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Post-thought: I think they actually care about you, but have so little experience (like all of us) expressing feelings and needs properly. They might be saying deep within themselves ... probably below the level of their consciousness :-) ... "Hmm, how could I express that I care about him and this might be a big deal for him, I wonder how he is taking it ... hmm ... I have no idea ... oh, I know, I'll say something that if this situation is truly bothering him, he'll react to. That's how I'll know if it is bothering him or not and he is okay or not".
Sounds like a lot of vaue in folks learning NVC there, from the little admittedly I know about it so far. However, if what I'm saying sounds true, hopefully these comments and reference will benefit you.
Have a great day Bro.
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Permalink Reply by Tony on
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Thanks everyone. Been on a bit of a rollercoaster the past few weeks so it's been best foot forward not to lash out at others just because I'm having a bad hair day. I can usually deal with the day to day stuff as long as the day to day is relatively the same. Guess what I'm trying to say is I learned to deal with a bald head and patchy beard but the loss of eyebrows turned me upside down.
As to people and there comments, I'm finding that there are a few, different kind of people out there:
- Those who subconsciously are nervous about your appearence. They try not to say anything but it slips out anyway. You can almost see them thinking "dumb,dumb, why did I say that..." I see no need to say anything as they have already beat themselves up over what they said.
- Those who are very uncomfortable so they try to lighten the situation by making a joke. IMHO, I don't believe this is malicious. Rather, it's just a misguided attempt on their part to break the tension. Now that my emotions are back in check, I'll take the person aside if it happens again and explain. I sense they will understand and will more than likely be apologetic but appreciative that I quietly brought it to their attention without an audience.
- The village idiot. Those who try to elevate themselves by publicly pointing out the perceived flaws in others...fat, bald, big nose, manner of dress, etc. We all know the kind. Folks like this get under my skin. They are very insecure in themselves so they attempt to shift the focus to someone else. Personally, I find that these folks are often mean spirited and condescending. This person happens to be both. The primal side of me wants to wash his mouth out with soap but his accomplishes nothing other than a few minutes of satisfaction. I plan on letting him know his actions are offensive & inappropriate. I'll also let him know that I saved his email as it represents workplace harrassment and, if nothing else, his behavoir is unprofessional. He gets one more chance then I'll let HR deal with him. I'm thinking that the possibility of professional discipline will be enough to keep him out of my 'hair' for a while...not to mention that he might be a bit intimidated by a big, scary bald guy with no eyebrows...yes, alopecia can be useful at times.
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Permalink Reply by Heather L on
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Hey Tony,
Wow as far theories on people-- I do agree! But how diplomatic of you! I say punch in the chops and keep walking!
to the AA questions I did ask my doctor very similar questions a few years back and this was her response: AA- Just patchy loss on the scalp. AT- total hair loss on scalp. AU hairloss that progresses behind the scalp to the rest of the body. All can be interchangeable for example one patient can have just AA. One straight to AU .. or can go back and forth between the stages.
She has seen patients with AA for years and then suddenly without plausible reason it will turn more progressive to AT.... and she has seen the reverse- AU patients re-grow hair with all but a few patches. So Yes according do my Doc. your dx can change depending on extent of hair loss. Yes - she also said AA is only patches on your head. I would guess that yes AT would include only a few stragglers and vellus hair. It does sound like what you are experiencing is working itself to AU. BUT as you know it is unpredictable so it all could just stop falling out as mysteriously as it began go! I am not aware of another type of alopecia areata where patches are lost from other parts of the body rather then the head.... but why not?
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Permalink Reply by Chris Jeffer on
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My own experience with AA and Totalis and from what I have seen and heard from others is that AA can become progressive if the underlying cause for the hair loss is not dealth with.
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