Replies to This Discussion

Permalink Reply by Mary on October 14, 2009 at 12:13pm

Hello Stephanie. What's happening to you sounds very similar to my experience. I had my first small bald spots at age 47. It was diagnosed as AA, and I started using steroid lotion and getting cortisone shots. I have no family history of AA. In my case, it stayed at the level of repeated, but hideable, bald spots for about 7 years. Then at age 54, it progressed very rapidly, and I lost all body hair - AU. (Photos on my page show the progression, and where I am now).

Alopecia World is a great place for you to get information and support. The thing about AA is that it's completely unpredictable. You won't necessarily lose all your hair, but it is a possibility. I thought it would be the end of the world if I lost my hair...but I came through it and life is wonderful - with hair or without.

Hang in there and take it a day at a time,
Mary

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Permalink Reply by Stephanie on October 14, 2009 at 1:24pm

Hi Mary,

Thank you for responding so quickly. I've been trying to deal with this one day at a time because the unpredictable nature of this condition is so hard for me. I am a fitness instructor and stand in front of people every day, supposedly the "picture of health". As of this moment I am not emotionally ready to let people know. Those I HAVE told treat me with pity and as if I am sick, constantly asking me how I am, so it's much more enjoyable to be with those who don't know.

Everything I have read points to people under 20 who actually lose all their hair permanently, so you are the first I know of with total hair loss. It is so nice to hear that you are happy. I saw someone who assured me that it won't change who I am and it gives me comfort to think that is so. For now, it has. I have never been sad or anxious and the stress they say "causes" alopecia only occurred after the diagnosis.

Do you think I should go to any other doctors (immunologist, endocrinologist, etc) or is there really no explanation or cure for this? I don't want to be chasing rainbows but I also don't want to miss something if in fact there IS something wrong with me.

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Permalink Reply by Mary on October 14, 2009 at 1:34pm

Stephanie - I am a folk dance instructor and also a drummer. I teach a weekly dance class, and am in front of, or in the center of a circle of, dancers. When my spots got so big they were showing through my hair, I told everyone in the class what was going on so they wouldn't think I was ill. Then when I shaved the remainder off in Jan. 08, I tried wearing a scarf in class, but it's very aerobic and I sweat a lot. I very quickly got used to being bald in the class, and recently, also while performing with my band. (see photos).

I was under a lot of stress earlier in my life, and NO alopecia. When it happened, I wasn't under much stress. In my case, anyway, I don't see it related to stress. I don't know who else to suggest you see...others on AW have talked about much more medical stuff than I know about. I basically accept that there's no way for me to control this, and I'm just very grateful that I'm healthy otherwise. It's taken me a year, but I'm feeling very good about this "new me".

Ask your general practitioner if you should be checked out for other possible problems.

Good luck,
Mary

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Permalink Reply by Barbara on October 14, 2009 at 5:03pm

Hi Stephanie,

I am in my 50’s, also with no family history of AA, and was very much shocked and distressed to find 3 bald patches when I went to my hairdresser at the end of May 2009. I immed. started shots, steroid creams and minoxidil. I have had good success with a very noticeable patch on the crown of my head, very little success with the ophiasis pattern spots - which are apparently particularly stubborn.

On my own I started a regime of at least once a day using white iodine (also an irritant like the steroid ointment), and in the past few weeks switched to 5% minoxidil – though only once a day. I see my derm Thursday, but I think I am at a standstill. The real worry is that I have 2 really itchy spots – which often means new patches of bald coming. I have been hitting them hard with iodine and hope to chase those antibodies away!

Within 2 wks of diagnosis I had a hairpiece – a 3/4HH – since I was so mortified at the prospect of someone seeing me going bald! I did a google search looking for a salon locally and found one an hour away. Since then have found some much closer, but that 1st one turned out to actually be cheaper by a couple hundred dollars. I looked around for closer salons after ordering my hairpiece so that I would have options if I needed to get something in a hurry (like if my hair suddenly -or gradually- all fell out). The ¾ starts midway back on the top of my head so if all the front hair falls out I would not have coverage!

I did not opt for a custom piece because I didn’t/don’t know the course of this disease and I couldn’t spring for the additional cost.

I have no idea what caused me to get AA. Stress? I hit some of the greatest stress levels anyone could have in 1998 and 2001, and kept all my hair. Why now? My derm told me that getting AA at my age and because it is probably not related to stress is actually in my favor. I am holding on to that.

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Permalink Reply by Stephanie on October 15, 2009 at 7:00am

Hi Barbara,

What are ophiasis pattern spots? I will look into the white iodine but I wonder if my hair loss is too far gone at this point. My ponytail is about the width of a pencil and my hair piece will probably not last much longer. As it is I need to wear headbands or hats to keep it secure and I have such a headache after having it on.

I am definitely looking into a lace front wig. I have read so much on the internet that my head is swimming and it's hard to tell the difference between actual information and sales pitches, regarding "the best" options. As it is such an expense I want to do this right.

Good luck with your treatments. My derm just started me on an experimental treatment, shots like the current ones everyone gets, but something different. This was created by a doctor in New Zealand and it was meant for another medical problem but caused hair growth. He told me that it takes 5 times (every three weeks) to see if it will work, so that's another 4 months. Bottom line, none of us knows if these treatments are working or if the body has just decided on it's own to re-start the hair. For now, I am willing to try things.

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Permalink Reply by Barbara on October 15, 2009 at 1:34pm

Hi Stephanie,

The ophiasis means you have a band, or close to a band around the nape and rears. Here are some pictures. Mine is not this advanced, and the band is not quite connected – so still patches. I am hoping the treatments have kept it from spreading and the patches from joining together (any further).

I cannot say that decolorized or white iodine works, I am giving a try though. I had to have my pharmacist order it. Came the next day. And my derm said it could work as it acts as an irritant.

Do you know what the new treatment is? I go to see my derm in a few hours and would love to talk to him about it. However, I feel I have just as much knowledge of this disease and the treatments as he does!

I am with you on overload with information! I went and signed up for wigsupport.com. Those people know a lot! They spout out wig brands, styles and colors like I could talk about books! You may find that site useful.

If you have the new treatment name, please let me know. Thanks and good luck to you!

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Permalink Reply by Stephanie on October 15, 2009 at 1:52pm

I don't know the name as he didn't tell me. It is a guy in New Zealand and I think it was meant for warts or some other type of viral growth, the treatment to trick the body into attacking it but in fact hair started to grow. I will see him in three weeks and will get more info for you. His name is Dr Ivan Cohen and he is in Fairfield, CT. Check out his website, though I doubt it's on there as he just started using it.

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Permalink Reply by Barbara on October 15, 2009 at 2:07pm

Thanks Stephanie,

I'll try and track it down and bring a print out with me tonight. take care!

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Permalink Reply by Rebecca on October 14, 2009 at 5:16pm

Hi Stephanie,

I've had AA since I was 10 yrs old, always a spot here and there - nothing that I couldn't hide easily. In college I was in a very demanding program and my AA came on stronger than ever, but again I was able to hide it. It's been like this for years, always having at least one spot and sometimes up to a third of my hair gone. Within the past few months I've lost over 50% of my hair; I went through some really rough days trying to deal with it (I think for 2 weeks I cried every day). I got my first wig a couple weeks ago, and a few days after that I buzzed the rest of my hair off; this is when I fully accepted my AA but that acceptance took many years. I have been tested for all the thyroid problems, tried the shots (both in the scalp and high dose cortisone in my buttock) and various creams/lotions (some steroid, some for skin irritation) with no results. I believe each person has to deal with their alopecia in their own way - if going to a specialist, acupuncturist, nutritionist.... will help you feel better than you should do that for yourself. I have a profession where I have to attend public municipal meetings, go out to job / construction sites, and various client meetings for these I have my wig. Everyone (family, friends, co-workers) that I have explained my AA to has been very accepting and not treated me any differently, I think this is because I'm not treating myself any differently. One the thing I’m still having problems with is dating – just haven’t gotten to that point yet. I have found this site to be very helpful and comforting. If you need someone to talk to please feel free to contact me. And as Mary said, take it one day at time.

Peace,
Rebecca

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Permalink Reply by Stephanie on October 15, 2009 at 7:30am

Thank you, Rebecca. Would you tell me what kind of wig you bought? As soon as I get mine I will probably shave off the rest of my hair, not because of acceptance (yet, anyway) but for comfort. I have not told my children yet. I have two boys 22 and 18 and we are all going out to dinner for my birthday tomorrow night. Oddly, the younger one has not noticed my thinning hair or the piece which amazes me as I think the two contrast so much.
My older boy is coming home from college to have dinner with us. If he notices I will have to talk about it.

I told Mary that I hesitate to share this with others because so far those who know look at me with pity and treat me as if I am sick. You are probably right that it is because of my own feelings. That had not occurred to me. It's just too new and has been so aggressive, with big clumps coming out into my hands in the shower, that I haven't been able to get to the acceptance part yet.

As for the dating, you will find someone. My husband is not visually stimulated at all and there have been times when that annoyed me. But, in the long run it's best to have a partner like that as we all age. When he and I are old and wrinkled (and bald ... he shaves his head every day) he won't care. He says he still sees the girl he dated 31 years ago. There are people out there who will not care about your hair but I understand the first step is the hardest. Once you are married you accept physical changes in your spouse because you realize it doesn't really change who they are and you love them regardless.

I really appreciate your advise. Yes, I am focusing only on this day and it is comforting to hear from others who can relate to what I am going through. It's been lonely up until now.

Best, Stephanie

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Permalink Reply by Rebecca on October 15, 2009 at 10:56am

Hi Stephanie,
I don't know much about wigs, with exception to they can be very expensive. When I went for my consultation, I cried the entire time I was trying on wigs. I tried on a hair piece but because of the unpredictability of AA my stylist recommended a full wig. My wig is human hair and has a lace front. The salon I went to specializes in wigs for cancer patients and alopecia people; I felt very comfortable with their recommendations. When I went back two days later, I brought my parents and best friend as my support system; I knew that anything I put on would not look like me in my eyes and having support in making the decision of which wig to purchase helped me so much as well as making the experience a much happier one.

When you decide to purchase a wig, also purchase a wig cap (just a few $) at the same time so you can stuff the hair you still have under it and try this out before shaving your head. Oh, also double stick tape, this helps in making you feel more secure with the wig on – knowing your wig won’t blow off in a gust of wind or has become crocked on your head gives you bit more secure feeling. My stylist helped me so much with all things wig related; I’m actually dropping her (my wig) off tomorrow for more alternations – she's still a little big.

If you decided to shave your head, it should be a decision that you feel very comfortable with, not something you feel you must do. One of the reasons I shaved my head was because I didn’t want to see the clumps of hair falling out every day; it was too depressing / upsetting to start each day like that. I now feel comfortable around family, friends, and co-workers without my wig on. I walked through the gym the other day without a baseball cap on (I never wear my wig to the gym – I sweat too much); this took some courage building in the locker room but I decided I would just bite the bullet and do it - I have to walk through the weight room to exit the locker room. This may sound a little strange but I think I have a new confidence building in me – I hope you find the same.

Peace,
Rebecca

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Permalink Reply by Stephanie on October 15, 2009 at 1:05pm

Okay, I am keeping notes! I am very lucky that my hairdresser of 22 years is also a dear friend and she is helping me through this. Actually, she is planning to go with me to try on wigs as who better to find something that closely resembles my hair? That said, she is learning along with me.

I have to tell you how amazed I am by your bravery in the gym, and it is obviously due to confidence. When I see women walking around without hair I always think, "You go, girl!" Mostly though, they wear scarves in my classes and the hair loss is usually a side effect from chemo so the hair comes back. I do know that I will come to terms with this as I already have made great strides but it's too soon to even imagine leading a class without something on my head. Frankly, I need it MORE when I am teaching than any other time because all eyes are on me. I guess time will tell.

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