Comment

Comment by chris for hair on June 25, 2013 at 10:50am

Sandy's comments inspire me. I also wear synthetic, open wefted wigs and live in a hot climate and am outside most of the day. A couple of weeks ago I experimented with leaving my own puny hair down or wearing my wig in a low ponytail. The ponytail was much cooler. I could never get my own hair into a good ponytail anyway, so that is not an option.
BTW, my policy in selling wigs to my clients is to give the lowest online price I can find on the day of the sale. While this may not make as much profit, I still do make money. I have found that the online stores use a bigger markup than the manufacturer recommends and then give the discount. If storefront retailers were more customer oriented, they would compete with the online stores and still make a profit. Unfortunately many do not see things this way.

Comment by Rita - Canada on June 25, 2013 at 10:37am

Yesterday was my 3rd visit to derm. One has to see the assistant prior and told me in their research, FFA was seen mainly in Postmenopausal,Caucasian,Affluent Women. The word affluent startled me(I would consider myself middle class)and I wondered-ok-prob.eats well/colors hair as I do,perhaps a multitude of vitamins etc. What the heck does this all mean really? Eat poorly,discontinue hair coloring & vits if this is what causes this affliction. Anyway, the Derm came in & told her I had tried topical Clobetasol for 8 mths now & hair continued to shed and didn't really want to do the oral drug route. However, because she continuously reminded me that if I did nothing & give up,I would surely lose much of my hair, I came away with the dreaded Overused drug in society, an antibiotic. The one she prescribed is Doxycycline. I immediately went to the health store for probiotics but am hugely uptight about taking this drug for 3 mth trial .She also said to continue w/Clobetasol.

Comment by Celia on June 25, 2013 at 9:39am

Carol - I looked at the wig support group earlier today - I am not quite ready yet, but it looks like a good one. Some ladies here have had this problem for a number of years. For me it's only been 18 months but it feels like a lifetime ! I totally admire many of you who haven't let IT take over your life - I am still battling with this. It's so comforting though to know there are many people out there who understand. I see Dr Harries on Thursday and sometimes I think that making that round trip is a little pointless. Any questions any of you might have - I will ask. XX

Comment by Celia on June 25, 2013 at 7:24am

Sandy - thanks for the info.
I was looking back and you were one of the first ladies to comment on this site. It started one year ago today. You have come a long way and sound soooooooooooo upbeat now ! That's great ! How short is your own hair now ? Do you go to a salon to have it cut now and again ?

Comment by PamW San Diego, CA, USA on June 25, 2013 at 1:48am

Thanks, Sandy! Last summer when I thought my hair loss was going to be more rapid, I purchased a topper, which has to be clipped in. I liked it because it looked like my bio hair, but I could not tolerate the clips since my scalp is so sensitive. Also, it lays flat, you can't get any height. Some of the synthetic wigs look so stylish and pretty. So, up close it doesn't look to wiggy?

Comment by dee on June 24, 2013 at 4:18pm

Kath - thanks for your comments. Funny thing is my hair has always been a pretty miserable affair, fine, floppy and a mousy brown but how I treasure it now. I don't think I can do a part head of hair even for in private. So when do you shave off what's left and go down the scarf and wig route ? Anyone like to share their personal experience ?
I also don't want people to think I've had chemotherapy and feel concerned and sorry for me. So will I tell more people?

Comment by PamW San Diego, CA, USA on June 24, 2013 at 4:10pm

Sandy, are you comfortable? Does it feel like you are wearing a helmet? Also, did you try any on in a shop before you started ordering on line?

Comment by Jodie UK on June 24, 2013 at 2:32pm

Debs- thanks for all the info on essential oils, I have already ordered these, and will keep you posted about how I am doing with them, wether I feel they are making a difference.

I know there are a lot worse things that can happen in life than FFA, and I am slowly beginning to accept it, and I am getting on with my life regardless of FFA ,but I will never stop looking for and trying things that I think might help.

Comment by Kath UK on June 23, 2013 at 5:11pm

Dee, please don't feel ashamed of freaking out about your hair loss. I sympathise with you because I too did a fair amount of freaking out when I first realised that my hair was disappearing but I've had several years to get used to the idea.
The fact that wearing a hairpiece could actually be fun and even empowering came as a complete surprise to me.
I really liked Sandy's approach to wigs - that she just' plops one on' and off she goes!

Comment by Debs on June 23, 2013 at 3:39pm

Celia I do hope that the hydroxchloquine will work out for you and this side effect of hair loss is just a temporary thing where the hair will grow back. I would like the cause of FFA to be isolated but no doubt it is a mixture of our genes, environment etc.. all acting together. So many women are now being diagnosed, which is dreadful but maybe with more patients the doctors can find an effective treatment, I wish they would do research into some of the natural alternatives because they have been shown to be effective in other autoimmune conditions. Then we could have a definitive dose of turmeric to take. XXXX

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