Alopecia World
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Newbie with AU I think!
I am not sure where to post. I am new to this site. I am a 59 year old female.
My father lost every hair on his body when he was in high school - he was born in 1922. He was my dad, so it was just the way it was - We didn't even notice it - That was part of the way we were raised. The way someone looked never had any effect on who they were.
Back in the late 70's I was going through a tough stressful time - suddenly I had a silver dollar sized bald patch above my ear. It made me very nervous at the time as I was only about 18 and on my own andhavin the fun a young girl has on her own :-) I never told anyone - I was so scared I had what my dad had, and at 18 that was not a fun thought. Thank goodness it never got any worse and was gone within a year.
About 6 months ago I suddenly noticed one of those patches over my ear. It got much bigger fast and I developed about 7 of them - they all seem to be merging together now - I also suddenly noticed that my arms, that always bothered me because they were always so hairy are now void of any hair at all - I lost half an eyelash on one eye and most of my eyebrow on the other.
I have been trying to ignore them, but even over the last week or 2 it has gotten so much worse. I found this site and have been reading and trying to wrap my mind around what is happening. I never really knew anything about it - I didn't know there were different types.
So since I no longer have hair on my arms or legs and probably 30% gone on my head, and it seems I read that AU is likely heredetary, should I expect that this is AU and will probably lose it all? It doesn't seem to be important to get a diagnosis from a DR., unless that will tell me what to expect. It seems people here with experience may teach me more than any doctor could :-)
Any info or insight would be appreciated:-) Glad I found y'all :-)
Replies to This Discussion
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Permalink Reply by Anna on
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Hi there,
I totally feel you :). I am 49 and have been AU for one year exactly, after having had only two previous episodes of AA, at ages 17 and 27, each time only one patch at the back of my head which filled in after about a year (no family history at all).
It does sound as if you are headed to AU, though of course one can never be sure - I would recommend that you see a dermatologist who knows about alopecia to start a course of treatment. It tokk about 8 weeks for me to go from one patch to complete hairlessness this time around, and I haver been trying every single kind of treatment, so far with no success (I am currently on Xeljanz but seem to be a non-responder). Those of us on this forum know too well how devastating and terrifying this disease is.
Every person's alpecia is different. You might have spontaneous regrowthm the loss might stop, or you might go on to lose more. You're right - the diagnosis doesn't seem especially important - it's obvious what it is - but it;s a good idea to get some blood tests run to see if you have any other medical condition which might be causing this.
Best of luck, and let us know how your journey goes.
Anna
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Thank you so much! I figured there is no way to know what is coming. I will see if I can find a good good dermatologist. I asked my gp dr about it but I seemed to know than he. And that’s not much.
Thanks again!
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Permalink Reply by hagster on
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Alopecia Universalis is an autoimmune disease and can only be inherited if both parents are carriers - which is pretty rare.
I lost all my scalp hair in less than two weeks and the rest of the hair on my body in another two weeks. Mine was considered fast and some people take years to lose all their hair. It is an individual journey.
Get yourself a wig asap. It will help retain a look of 'normalcy' and aid with your confidence. AU is something you will be living with for the rest of your life; there is no cure and most treatments have been proven not to work on a very high percentage of people with AU - whereas some types of alopecia can respond to treatment. There is also a small possibility of spontaneous regrowth.
There are some very specific problems that come with AU like eye problems from loss of lashes, allergy problems from loss of nose hair, hearing problems from loss of ear cilia, nail problems, autoimmune diseases are known to group together, and tiredness - to name a few.
You can do specific searches in this discussion area using the search box at the upper left for answers to a lot of your questions. And, if you use facebook, there is an Alopecia Universalis support group and groups you can join to learn about all things wigs.
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Thank you so much! I appreciate all info! I always had very strong nails and suddenly they are so weak - almost like paper, and splitting, so that is why!! And I have been having issues with my eyes.
Thank you again so much! My first wig was just delivered. I will have to go to a wig shop and learn, but ordered one on line just to get the feel :-)
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Permalink Reply by Anne Williams on
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I am a 63 year old woman. My AA started in my 40's with only loosing one patch at a time which would eventually grow back in. About a year and a half ago I noticed my scalp hair shedding at a rapid rate. I still had brows and lashes but noticed my brows thinning. This was around December - March. By April, I made the decision to shave it all off. I don't even have any scalp stubble any more. I have since had my eyebrows micro-bladed. I don't wear wigs just because of don't feel like myself with one on. Fortunately for me, I am retired so I don't have any of the public angst that goes with work or dating. I was devastated when I started loosing my hair at first. My father also had alopecia but didn't develop AU until the end of his life. He was bald my whole life. Only I never knew what caused his baldness until I lost my first patch of hair. I miss my lashes the most. I also have dry eye problems and must apply eye drops regularly.
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Thank you! I actually have been having eye problems - super watering and thought the loss of lashes was due to that, but I am learning it is probably the other way around - My lashes have grown back, my one eyebrow has not, and my patches are no longer patches but large bald spots turning into one big one.
I have always had long hair my entire life, like to my waist most of my life - cut it to shoulder length a couple years ago and have been trying to grow it back because I miss it long - I guess I better get used to it non existent :-) I am sure wondering how long it will be before I need to shave it and figure out wigs. I am always hot and my head and face are always over hot my whole life, so I think I will have to think about what I will do. Hard to know till the time comes :-)
Thank you so much! I really appreciate all the info. It is helping me wrap my mind around what is sure to come :-)
Mary Lou
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Check with your eye doc. I had severe problems with my eyes that started last summer. Thought I had an eye infection then bad allergies. My eyes weren't manufacturing the kind of tears that keep my eyes lubricated. Now it's allergy drops twice a day along with lubricating drops throughout the day. Helped so much.
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