Comment

Comment by Sweet K on February 17, 2012 at 1:09am

Hey my sistas and bros... I have had AA for 35 of my 48 years of lyf.. It first start during my jr high school year... I have had my scarf pulled off, talked about and ridiculed to the 10th degree during the most pivotal point n my lyf during jr high school years.. I managed with God's love and help to make it thru that. During my graduation yr, my hair completely grew back but because of the stress of getting married to a very abusive husband, it fell out again at 21 yrs old.. then I was blessed to get a divorce and go through 8 yrs of celebacy. Then I remarried a wonderful guy who loved me for who I was. He passed away 8 yrs ago from the debilitating diabetes disease. So I am now regaining my lyf with this AA.. No complaining though because that is the only thing I suffer with.. I'm now living my lyf with Jesus... I love who I am and finally I can say.. I love how I look,.... despite not having hair on my entire body... I look at it as a blessing because my skin is so smooth and soft, lyk a baby... I give a shout out to all the AA's to hang in there... WE R BEAUTIFUL...

Comment by Stacey on February 16, 2012 at 12:52am

Kyle, to respond to your curiosity below, Mine started as thinning whilst pregnant; 3 months after the birth I had a patch appear on the back of my head; another appeared, then another. The hairline receded, and my eyebrows got patchy. This was about 9 months after the first patch. The following year was patches merging, regrowing slightly then falling out again, losing eyelashes, all my eyebrow hair and somewhere in there all my body hair just vanished too. The last to go was a small patch of fine hair on my right forearm, which I wore proudly. One day, I said to some work friends, that I wasn't comletely bald because I still had a little patch on my arm - then I looked down and it too was gone. This was just shy of two years after the patches. I wore a wig from about 10 months into it, and now bandanas, scarves or a wig if I am 'dressing up'! The condition progresses differently for everyone. The hairs were tapered like an '!' and fell easily when gentl pulled from around the margins of the patches. I tried many treatments to no avail, and the only worthy 'treatment' that I can suggest is a psychologist or a support group. I think you should find some other alopecians locally, see which dermatologists they can recommend and see them for a definitive answer. If no luck there, just let your body do its thing, and submit. It is not the end of the world, and sometimes a doctors diagnosis isn't everything. Hope that helps :)

Comment by Kyle on February 15, 2012 at 9:42am

Thank you all very much for your responses, these responses alone have given me more useful information that half a year or doctors appointments. I wish I had gotten involved in this community before now. In a sense I'm actually anticipating the day when all of my hair is gone because I'll finally be able to start moving in a better direction. The hardest part of this is how slowly it's happening and also the fact that I have not been positively diagnosed with the condition and my dermatologist continues to tell me that it's telogen effluvium though I have a tough time believing him. Stacey, you mentioned that it took 18 months for your hair to fall out completely, I'm just curious as to how it progressed and what your hairs looked/felt like. I first noticed my head hair thinning last February, then my body hair in June, and now there's not a single place on my body where the hairs aren't rapidly miniaturizing, falling out, and becoming unpigmented. What confuses me is there's still not a single completely bald spot on my body, though it seems there inevitably will be at this rate. Does this progression sound anything like your experience? I'm really trying to be sure of what's going on with me.

Comment by Susan Innes on February 14, 2012 at 12:24pm

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 Bald and Fabulous AKA Terri on February 14, 2012 at 10:37am

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 on February 14, 2012 at 5:26am

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 on February 13, 2012 at 6:40pm

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 B on February 13, 2012 at 4:50pm

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 on February 13, 2012 at 4:04pm

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 on February 13, 2012 at 2:23pm

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.

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