Comment

Comment by PamW San Diego, CA, USA on August 25, 2012 at 2:40pm

Hi, CJ. I liked your video, too! I agree with Sandy, your hair cut is good! Everyone wears their hair in the way that flatters their face! I think it is awful that the dermatologist made you uncomfortable. Mine is so encouraging -- she insists that if we can manage the inflammation, we can manage the hair loss. I just wish I had HER confidence.

I have really, really wrestled with wearing the topper and I have come to the conclusion that people can either notice my baldness or notice my hair. Which would make you feel better?

Sandy, if you are looking into the easi-fringe, you should definitely try things on in a shop first. They will have color wheels for all the different wig manufacturers. If you have a bad experience with one -- try another!!

CJ - I live in San Diego and teach so making the trip to Toronto is not possible for me, but if you could keep us up to date that would be great. I would just love to hear from one of the doctors that it is actually possible to manage this disease. Just one success story --- just one!

Comment by CJ- Christine from Ottawa Canada on August 25, 2012 at 11:26am

Hi folks, I've been quiet for a while as we are trying to pull together a great programme for our skin/hair conference in Toronto this fall. There will be a section on FFA, in case any of you want to come up and hear from Dr. Jeff Donovan, a researcher in the field.Also sessions on self esteem, effects of these diseases on our families, what to do about staring, sexuality. check out the little video on youtube http://www.youtube.com/embed/_S74MyA_HFA
I'm in there in the middle section - you will see my hair all forward covering the hair loss.
Mine is like yours Sandy, although I think my forehead may be further up.
I can't face teh idea of a topper or wiglet yet. I had a horrendous meeting with a dermatologist a few weeks ago.. she basically said this is no big deal, suck it up and get a wig. I was so upset , I haven't been able to talk about it. She suggested that I shouldn't have gone to the CARF conference because that just filled my head... also it was only for people with 'serious' disease. Mine isn't that bad yet, but I fear what will happen if I don't try to stop the progression now.
anyhow, check out the video and if you like it, please 'like' it . we are raising money to be able to cover the costs for people who can't afford to come to the conference. Also if you can, please send it to everyone you know! thanks for being here!
Christine

Comment by PamW San Diego, CA, USA on August 24, 2012 at 8:16pm

Who said you are not photogenic?? You are beautiful. I wear my hair the exact same way. And, I am glad that I know what you look like. When I saw your picture I thought you were wearing hair because you cannot tell you have hair loss until you pull it back. I wear my hair exactly like you. Hmmmm . . . maybe I won't bother with my topper???

I have just been diagnosed so I am not as far along. I have loss more at the temples.

I haven't had a day without something involving my hair. Today I went to my hair stylist who said I stayed the same and I shouldn't wear the topper because I have plenty of hair. Also I waited over a month for my insurance company to approve a referral to a hair specialist. The referral came through, but when I called for an appointment I found out that she isn't accepting new patients. Back to ground zero.

Comment by KarenGinny - Iowa, US on August 24, 2012 at 10:35am

Hello everyone! Pam that's great that everyone thought your "new" hair looked nice, they probably didn't know it wasn't your own. On the hair thinning topic, mine has thinned all over but mostly in the right side of my head with a very thin patch on the upper back right side that I try to cover by combing my hair that way. My part seems thinner too but not too bad. But the worst part is the whole front hairline and temples, pretty much bald for 2- 2 1/2 inches back, maybe more. I do have a thin strip of hair at the beginning of the hairline, but my hairstylist suggested shaving the front part so the rest of my bangs blend in better. And of course that part keeps growing back. My hair has also been growing all over the rest of my hair at a normal rate. I've been letting it grow longer this summer and now I need a trim. I've also been coloring it as I normally do, I don't want to be grey and bald! I did start using Nioxin shampoo and conditioner for thinning hair, so I'll see if that helps. I'm not doing any other treatment right now since my doctor didn't really suggest anything. Hope everyone has a great weekend! We may go to our local Air Force base Air Show tomorrow and Sunday we have a Boy scout picnic we're helping at. Oh and I went to a rheumatologist to ask about the swelling and stiffness in my ankles and feet and he thinks it's a reaction to my blood pressure meds and not arthritis like I'd thought. So it wasn't as bad as I thought. :)

Comment by PamW San Diego, CA, USA on August 24, 2012 at 9:43am

Ladies, I am so amazed by your comments because we all have the same disease and we have are all being treated differently and I think be given different information. Here is the latest info from my dermatologist (as of yesterday):

I had another round of steroid injections and she thinks that my hair loss remained the same (no change). I feel like I thinned more on top (center part) but she disagrees. I am getting my hair cut today -- my hairdresser will know for sure.

I continue with the Plaquenil and Doxy. I only use the clobestasol foam when I am itchy. Celia - do you use it every day whether or not you are itchy?

My doctor said that the hair falls out because the follicle has already scarred. Once it is gone -- it is gone. You can't bring back your hair but the thought is to control the inflammation which causes the scarring. Why is there inflammation in the first place? No one seems to know. Some think auto immune, some think some kind of hormonal trigger, and some think toxic lipids because we are not processing carbs and fats properly.

I had crazy liver tests for the last few years and this month for the first time in years I had a normal liver panel! Yea for me.

The derm also told me that they really don't know if the meds help or if it is the patient that just gets better. Some people stop losing hair after being treated with plaquenil and some people don't stop losing hair even on the meds. And from what CJ said after going to the conference and meeting people with FFA, it doesn't sound too promising for us. I just can't wrap my head around that yet. I feel like I have to be hopeful that my hair loss can be stopped. I was referred to a Hair Specialist and am waiting to get an appointment. I will share any info I get.

In the meantime -- I love, love, love my eyebrows. I am less than thrilled about "my new best friend". After a few hours, it does feel like I am wearing a helmet. But, if I don't wear it now, I risk causing a major upset in my classroom and community if I suddenly walk in with new hair. My daughter told me to do what pleases me and not care what others think. Where did I get such a wise daughter from?

Thank you ladies for supporting me.

Now about my new bes

Comment by ChrisC. Chicago, IL on August 23, 2012 at 11:54pm

Hi Pam, thought I'd mention that I similarly have been thinning on top. There is a spot to the right of my part that is quite thin. . . so far I can cover with the way I brush my hair. I guess that there has been a general all over thinning. I set my hair on hot rollers almost daily and used to have two full rollers on either side of my head. . . and now the hair fits easily in just one roller per side. . . sigh!!

I went to a hair specialist to get information and she showed me something very similar to what you are wearing in the picture. However she was thinking that I should consider a full wig when I'm ready so blending is not a problem and for ease of use. I'm sorry but I can't imagine that yet.I have another appointment with another hair specialist in mid-September that does hand-tied hair pieces—we'll see what he recommends. . . as well as an appointment with Dr. Barbosa to get all the facts that I can. Will keep you all posted.

I continue with the Finestride, Minoxodil and Clobeteso Propionate. . . not sure how long I should continue with the steroid drops though. . . it does thin the skin. I want to keep the inflammation down as much as possible.

Comment by PamW San Diego, CA, USA on August 23, 2012 at 6:07pm

Hi, friends. I went to work for a few hours a day and have seen many of my colleagues. Most just said hi and didn't even notice. One said that she liked my hair. No one has noticed. The only thing is that by the end of the day, I cannot wait to get it off. It feels like you are wearing a hat all day.

I am going to the derm later this afternoon for a check up. I was also referred to a hair specialist, but I am waiting to be able to make the appointment because paperwork has to go in.

I have a question -- most of the real loss has been at my temples and bang area. However, I am noticing thinning in the center part. Has anyone experienced this? I am just hoping that I am not going to get more bad news this afternoon.

Thanks for any info you can give me.

Comment by Heidi Short UK on August 17, 2012 at 8:39am

Pam it looks great! I went on the internet and ordered a small real hair fringe with side bits. It was a cheap one from amazon £15.99, my daughter who is a hairdresser is going to colour it to match mine. I thought I would try it, although I don't need it now I want to be prepared! I'm also using it to experiment, if I need a larger one or could I adapt it my self etc. My daughter always wears clip in hair extentions so she is familiar with how they work etc. Once I get it sorted I will also put a photo up.

Comment by PamW San Diego, CA, USA on August 16, 2012 at 8:26pm

I didn't answer your questions. No you can't sleep in it. It clips onto your head and I would think that it wouldn't be good for your scalp to sleep with it. It takes two minutes to put it on. Remember the first few times you put contact lenses in? It took forever, and then you get to be a pro. I just give it a comb and mostly use my hands to smooth things around.

Comment by PamW San Diego, CA, USA on August 16, 2012 at 8:20pm

Oh, man! I can't believe I had the nerve to post that photo -- but I wanted you to see. It is a really good color match so when the wind blows you mostly see my bio hair. I think that if you looked at me closely you would know it is a piece because of the part -- it is just so small. My bio part is wider. Also the crown part is flat -- I don't have volume. Now, having said that you'd have to be staring at me to tell. For Open House when parents are staring at me I will put a head band on or something to break up the scalp line. Does that make sense? The gal where I purchased this has a website and she sells to people all over the country. She is a wig wearer herself and has many videos that are so instructional as part of her website. Her business is Patti's Pearls. If you do a google search you will find her.

I don't think it is hard to look good now -- the test will come after it has been washed a few times. The piece is human hair - Remy hair (whatever that means).

I know I don't need anything now, but I just don't know what a month or two from now will bring and I am hoping just to fade into the background. If I wait, wearing a piece will be so noticeable. I don't know why that bothers me. People have false teeth, fake eyebrows, fake boobs -- but fake hair is not cool.

• ‹ Previous
• 1
• …
• 498
• 499
• 500
• 501
• 502
• …
• 507
• Next ›
• Page