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Comment by Annie on July 1, 2013 at 5:54pm

Hi Everyone,
My name is Annie. I live in Missouri, USA. I was diagnosed with FFA on March 14. I have been to three doctors (None have previously treated FFA.), and finally got a prescription for hydroxychloroquine on June 21. It has taken me three months to read through all your comments, and I have learned a great deal. I haven't posted anything before now because I honestly didn't feel like I had anything beneficial to share with you. I'm not far enough into this disease to offer any medical advice, but I do have a couple simple tips that have helped me adjust to looking at myself in the mirror these days. First, my latest (and favorite) derm started me on men's Rogaine (5%) on my first visit 2.5 months ago. This has worked wonders. I have regrown a lot of the fringe around my face, which helps hide the bare spots. I also use it on my eyebrows, which haven't been affected yet. They are thicker than they have been in years! An unexpected bonus is that my eyelashes have gotten longer and thicker than ever before. I do have to warn you that the Rogaine made me shed more than usual about 2 weeks after I started using it. The shedding usually lasts about 6 weeks, which can be scary. My second tip is to use self tanner on the light areas around the face where the hair no longer grows. I use Jergen's oil-free for faces which is less than $10 at drugs stores here in the US. I no longer have to look at the white band that was a constant reminder of where my hairline used to be.
I want you all to know that I have appreciated reading your comments, and how amazing I think you all are.

Comment by Celia on July 1, 2013 at 1:52pm

My meeting with Dr Harries last Thursday............I am continuing with the hydroxychloroquine until I see him again in 4 months time. There are still more questions than answers. I find the time I have to sit in a room after being called through from the waiting room quite a difficult time but I guess this is their way of dealing with patients. I saw Dr Harries' registar for about 10 minutes and told him that I continue to lose hair and possibly more so since the med, but that the inflammation on the hairline is less - I put that down to turmeric I think...... He said he felt I was showing signs of anxiety. I waited a while until Dr Harries came in and had a discussion about the usual - triggers for this condition. I said I had read the leaflet regarding Avodart which is the drug used to treat males with enlarged prostate, and that I wouldn't wish to have that one although he said it is increasing in use for the FFA condition. I wonder, Debs when you next see Dr H if you would ask about the stats on success rate using this drug.
Alice - I agree with your comment on the affluent women aspect of FFA. XX

Comment by ElleMN, USA on June 30, 2013 at 9:19pm

Just wondering if anyone has had success with acupuncture?

Comment by Debs on June 27, 2013 at 2:20pm

Hi Rita, it does not look like I am wearing eyeline, it looks like I have more eyelashes than I actually have. The eyelash enhancement is much finer and the pigment is placed in eyelash line so it isn't noticeable and ideal to disguise hair loss. There will be practitioners in a major city like Toronto, I would check out wwww.heralopecia.com and ask the ladies on there if they can recommend anyone near you. It is a real art to do this so you do need to find a real pro. XXX

Comment by Rita - Canada on June 27, 2013 at 11:37am

Debs, What a wonderful idea for eyeliner. As you say, you must have a super professional to apply & I wouldn't know where to start as I am north of Toronto,Canada. If anyone else has had it done with success, please let me know. My sis had her eyebrows done some years ago but they are rather just too bold in color but she did choose it.

Comment by Debs on June 27, 2013 at 10:53am

EYELINER TATTOOS

I had my eyebrows tattooed in January and love them. This morning I had eyeliner tattooed because I can see that I am losing some of my eyelashes. The process was as follows:

Applied anaesthetic gel to numb the area.
That is left for several minutes.
Tattoo needle is used to prick the skin and more anaesthetic gel is applied so it can go deeper before the actually pigment is tattoed in.
The upper eyelids are done with eyes closed. It doesn't hurt and there was very little sensation.
The lower eyelids you have eyes open - BUT you look up and away so you don't see a tattoo needle coming at your eye it comes at you from an angle so it is out of your sight. The same procedure is done on the lower eyelid.

I hate injections and nearly faint when I have a blood test, I have a very low pain threshold and I can honestly say this does not hurt and you never seen any needles or tattoo equipment coming near your eyes.

I thoroughly recommend getting your eyelashes enhanced. I just had a subtle 'enhancement' I did not have a thick line of eyeliner applied. If I now lose my eyelashes I have this enhancement in place to mask the hairloss. It is a huge weight off my mind. The effect is very natural and not at all 'madeup'. I went to see my mother after I had it done and she loves it.

You need to ensure you have a very good permenant makeup artist to do your work. In the UK I recommend and go to Belinda Hayle in Chertsey, Surrey.

www.belindahayle.com

I had the work done at 10am today, I have no pain and no swelling at all. Am delighted. XXXXX

Comment by Debs on June 26, 2013 at 7:51am

Pam since you have not seen these folk for 15 years they will not have a clear picture in their head of what you look like, they too will have changed with time, weight/wrinkles/hair greying & thining... so I doubt that your hairline will be noticed. I am like Celia, I only tell very close family and a few close girlfriends, this is simply because I don't want to be in a position of having to educate people about FFA and alopecia when I just want to forget about it and get on with life as normal. When you see your friends I would just play it by ear. Enjoy yourself. XXX

Comment by Kath UK on June 25, 2013 at 6:17pm

Hi Pam - I hope you enjoy your reunion with old friends and relatives and I'd agree with Celia that probably nobody will notice any difference in your hair - they'll just be so delighted to see you again!
Even though I've actually lost two and a half inches off my hairline now, the only person who ever seemed to notice was my daughter who asked me one day why I had started to wear headbands.
We're all different and I take the opposite approach to Celia in that I now tend to tell friends and family, quite casually, that I've got a skin problem that's destroying my hair. I've found that if I am very matter-of-fact about it then people take their cue from me. Well - this approach works for me anyway. But like I said, we're all different and I've had this FFA for over eight years - possibly longer and have more or less come to terms with it.

Comment by Celia on June 25, 2013 at 5:03pm

Hey Pam ! My advice for what it's worth - is stay cool and say nothing. They will prob not notice anyway. Wait until you are ready - don't be freaked out because you have a social 'do'. I still have told only family - and actually - they say they don't notice. No big deal for them ! I have cut my husband's hair since we met in 1969. We are now 63ish. I think he would be panicking if I were to say hmmmmmmm looks a bit thin on top ! But he is supportive, if a little weary of me searching in the mirror every day ! And so - Pam - enjoy your time with your friends and family - DO NOT TALK ABOUT IT UNTIL YOU HAVE TO !!!!!! XXXXX

Comment by Pam on June 25, 2013 at 4:32pm

I am finding it a great support linking in to this group, it just echoes so many of my feelings and anguish over this condition.
I am off to Canada tomorrow for three weeks, to see old friends and relations who I haven`t seen for well over fifteen years. I am longing to see them, but also have a horrible thought that they will notice my vanishing hairline and say nothing...should I be the first to mention it??

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