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Comment by Susan Innes 10 hours ago

We've all come a long way on a very difficult journey which seems to have many forks in the road; but, we agree on one thing: It's not fun but we learn how to survive. It would be wonderful to be able to say how long a process will take or just when there will be an end to the hair loss or the beginning of a bright new future. All of you have expressed things eloquently; thank you

Comment by Terri 11 hours ago

I agree with Stacy. We just have to embrace who we are. knowing that we are still deserving, loving, and beautiful. I have been AU for years now but only lost all my hair on my head about 1 1/2yrs ago
Actually that was when I finally shaved the last of it off. I lost all my body hair much earlier than that. There is no rhythm or reason for the way our hair falls out. But we do control the way we will adapt to it.

Comment by Stacey 17 hours ago

Kyle, Beth, Rosa, Kathryn and all you lovely people,

I have AU, have hadfor 3 years, after and 18 month period of slow and emotionally draining AA.

We don't know a cause, we don't know a cure.

My advice is to get healthy in every other way - emotionally, nutritionally physically and try oh so hard to not let the appearance in the mirror get you down.

Your hair may grow back, it may not, it may be patchy, fuzzy, white, pink or purple. You are still YOU, so just make the most of it, and enjoy life.

You owe it to yourself after the crappy condition that you have found yourself dealing with.

:) Stacey

Comment by Kathryn yesterday

Hi Kyle,
Sorry about your hair loss. It's so frustrating to not get the answers you need for your condition.

My experience was different from yours... Hair loss started last March/April with distinct bald spots in back. It was quickly progressing to AU, so by late Aug I shaved what little I had left on my head. I did have a biopsy done a few weeks into it and at that time they said it was "Aggressive AA," which was helpful at the time because it was definitive and also ruled out some other conditions. I have since lost essentially all the hair on my body.

Although I'm not that familiar with your type of hair loss, I would stay optimistic. You were on that dreadful drug for 2 years, so perhaps it takes that much longer to become balanced again. One thing I've been working on that you may also consider is trying to cleanse. I have improved my diet, eliminating gluten, caffeine, alcohol and cutting dairy and sugar. (I know that's asking a lot from a college student, but it could be temporary.) I'm also taking supplements to "clean my gut" and replenish with nutrients. Finally, I use the sauna as much as possible (daily is ideal).

If you have coverage, it may be helpful to see a naturopathic doc. Hang in there. Try to stay optimistic, and most of all, stay healthy.

Kathryn

Comment by Connie yesterday

Beth,
I've have Alopecia since December 2009, which progressed to AU in March 2011. In November 2011 I started to see white "peach fuzz" growing on my face, fingers and toes, ears and now my lower eyelashes. There's no sign of anything on my head and the rest of my body, but I'm staying optimistic :)

Comment by Angie yesterday

Hi Kyle,

Sorry for your experience with this. My son began losing hair at 18 mos. and completely lost everything by age 3, including eyebrows and eyelashes. I didn't notice how the hair themselves looked to tell the truth. He is now 4 and a half and has some peach fuzz. I believe his issue was attributed to a weakened immune system from some sort of unidentified infection (could be bacteria, virus or parasite). No doctor was able to tell me what, but several felt that was the case. No test was able to identify anything. However, since this is autoimmune, I decided to focus on strengthening his immune system and limit junk food and allergens as much as possible. I feel this has contributed to the slight success we've been noticing. Along with his alopecia, he had terrible digestive issues and eczema. Both have since improved tremendously. We are just waiting for the hair to grow back. I am hopeful. It takes time for hair to grow back, so I have to exercise patience. Good luck and don't stop trying.

Angie

Comment by Kyle yesterday

Hello everyone, I've got a few question regarding AU and I have a feeling I'll get better answers from those who actually have it rather than a dermatologist who may have only seen it in a few patients, if any. Four years ago (freshmen year of college), I started losing my hair in the typical androgenic alopecia pattern and decided to try and do something about it so I took Propecia for two years, horrible decision. That unethically distributed medication caused me to become a fully impotent, depressed,and most ironically, I began to lose all of my hair rather than get any of it back. I noticed my scalp hair thinning entirely last February, this past June all of the hair on the rest of my body began to thin and all of this has continued to this day (all in a perfectly diffuse pattern). I've seen several dermatologists and 2/3 said it was probably telogen effluvium from the Propecie, I'd love to believe that however I am under the impression that telogen effluvium typically reverses within 6 months and I'm reaching a year with no sign of recovery. My question for all of you is, after you noticed hair shedding in any area, how long until it was completely gone? What did the hairs that fell out look like? Mine are nearly all tapered towards the root, going from brown to blonde, with a white bulb on the end of them varying in size. The lack of a sure diagnoses is what's really getting to me, it's been a year and I just need to know so I can truly begin to cope. It's been difficult because I never had any smooth round patches before it started coming out everywhere, I've only had slight nail pitting on one nail, and all of my shed hairs are telogen which contradicts the typical symptoms, however, all of the hairs are tapered which seems to be more related to AA. Sorry for the extra long post, I would greatly appreciate any answers to these questions or similar things, thank you so much.

Comment by rosamosqueta on January 29, 2012 at 10:32am

Hello, Beth. I have AU since 2009, and this year the hair inside my nose grew back, and some grey hairs in my scalp,but they grow very slowly. I shave my scalp once a month, and the hair is about 1 cm or less, and it covers about 10% of my scalp. I´ve been having this growth since october´11, and I don´t know if this is a good thing, but it gives me a hope.Who knows?

Comment by Beth S on January 28, 2012 at 8:43am

I have had AU for about 2 years. Prior to that I had very small patches that came and went about 5 times over 8 years. over the last month the light hair on my face has started to grow back as well as the hair on my ears. First it was once little spot so I tried not to get too excited as this would not be the hair I would want to grow back first but then the rest of my hair on my face started to grow back and it seems to be the normal type of hair I had before. Has anyone else experienced this after having AU? Was it just a start and did you have any other hair grow or just facial hair. I am trying to decide if I should have any optimism that this is the beginning of something bigger!

Thank you

Comment by Raymond on January 9, 2012 at 10:10pm

Hello Melissa. I'm an avid skier and generally love winter. But yes, my head gets cold if I'm careless for a moment. I have many toques (Camadian for winter hat - rhymes with nuke) Some thin some very thick. Sporting ones and "dressy" ones. My challenge was finding ones that stayed on my head. They would slide off or slide over my eyes. But then I discovered jogging toques. I think a bald person invented those. They resist sliding off and they come in many thicknesses. I have a good collection of those. When I ski I wear a thin running toque under my helmet. Very warm. So if you're having challenges keeping your head warm, try a running store and check out their winter running hats. Although I'm sure "hot shots" would work too. They work in gloves, I'm sure they'll work in hats too. :-).

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