Frontal Fibrosing Alopecia

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This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

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  • Anne Louise

    I have a consult for this Thursday to look into getting my eyebrows tattooed. I am wondering what questions/concerns to bring up. I have plenty of my own but thought I would ask the wonderful ladies on this forum.

    Mar 10, 2014

  • Celia

    Go for it Anne ! I was recommended the person who did mine by Debs - it was about 15 months ago now so maybe due a little top up soon.  I had to use Vaseline on them for a week or so and not get them wet for a week if I remember correctly.  I use sunscreen on them as they do fade eventually.   They were quite dark to begin with but once they are healed that soon softens in colour.  I found the process not painful but I was aware even with the anaesthetic, of a kind of being scratched, but ALL WORTH IT !  I hope you get on OK. 

    Mar 10, 2014

  • Pauline

    Anne, I had my brows tattooed back in December and felt so good about it that I have been back to have permanent eyeliner done too!  I had this done at a salon local to me http://www.hdbeauty.co.uk/ and cannot praise Rachel high enough - although might not be convenient for you ladies living in the south of England!  However, the whole experience has definitely restored a bit of confidence in me as far as my looks go and I do not seem to dwell so much on the hair loss!  The eye liner was a little bit more uncomfortable than the eyebrows (which I hardly felt at all!).  I went for the natrual brush strokes on my brows and a slightly smokey effect for the eyeliner which is yet to heal but I am pleased with already!  P :-)

    Mar 10, 2014

  • Jules UK

    I will be participating in a telephone conference on Wed evening for the Hairloss PSP (Priority Setting Partnership). The first meeting will be on May 1st. There's more info on the Alopecia UK website under Getting Involved. There will be a survey for anyone interested (ie. all of us!) to complete, in due course. Will keep you posted. X

    Mar 10, 2014

  • Caro UK

    Anne, I've lost most of my eyebrow hair and had my eyebrows tattooed last year by a cosmetic/medical tattoo artist. I had a consultation beforehand where the proceedure was explained to me, I was able to see photographs of different eyebrow shapes and we discussed what "look" I wanted to achieve. I'm thrilled with the results! Yes, it was expensive but definitely worth it. My new brows look really natural and it's great to be able to get up in the morning without having to mess about pencilling them in. I've had my brows "topped up" once since I originally had them done. Local anaesthetic cream was applied before the proceedure and I hardly felt a thing. It's important to keep the treated area clean and dry for a few days afterwards and I was given ointment to apply to reduce any inflammation but I had no problems at all. As C says, you need to use sunscreen on them and they gradually fade over time but then you just go to get a "top up".

    Mar 11, 2014

  • Pam

    I had my eyebrows tattoed in December just before Christmas, and they are a bit too severe, rather too hard, dark, arched and straight and angled, and I think it makes me look a bit like a Angry Bird!! I now spend my time being far more aware of various different eyebrow shapes than before I had them done, but its too late!

    I wish that I had been to someone like Caro, who had spent more time showing me different eyebrow shapes beforehand. Now that I have had them done I am stuck with them - at least until they fade.

    However, on the positive side, it is great to have eyebrows that just stay there, and don`t wash off, and they probably look better than my own attempts at pencilling them in.

    Also, I have just come back from a cycling holiday in Vietnam where it was very hot and sticky, and it was great to be able to wear a cycling helmet in those conditions, and swim, and not worry about my eyebrows disappearing! (Very pleased to say that my new hairpiece survived well too!! It was quite a test!).

    Mar 12, 2014

  • Jean

    I had my (non-existent) eyebrows tattooed by Belinda Hayle last year.  Although expensive, it was the best thing I ever did!  I'm so much more confident and it's great that I can swim, do a gym workout, dance etc. without fear of loosing part of my eyebrows.  With absolutely nothing until the lovely Belinda worked her magic, my brows often looked like Morse Code, where perspiration removed patches of eyebrow pencil!!!  Although my brows are now a little lighter, I hope to get another few months out of them before I go for a top-up.  Might even go for the eye liner as well next time. 

    Mar 12, 2014

  • Debs

    Hi Jean, I go to Belinda Hayle too. She did my brows and my eyelash enhancement too. I am delighted with her work. I went to Belinda a year ago and am still happy with the effect. I am going back soon for a top up to my brows. I can thoroughly recommend Belinda. Her salon is in Chertsey, Surrey. www.belindahayle.com

    Mar 12, 2014

  • Caro UK

    I went to Cathy Brown for my eyebrows - she has an aesthetic beauty clinic in Mitchells Sutton Coldfield, West Midlands. She is a semi-permanent makeup and medical tattoo artist.  She trained with Nouveau Contour and is now one of their training team and teaches medical tatooing when she is not treating clients. Cathy is absolutely brilliant, great at putting people at their ease and really skilled. I'd thoroughly recommend her for anyone that lives in or around the West Midlands. www.cathy-brown.com

    Mar 12, 2014

  • Celia

    Jules - I hope your Wed evening conference goes well.  Well done for doing that.

    I am so looking forward to seeing some of you on the 22nd.  If there are any ladies who find they can now be free to join us on that day, please let me know. x

    Mar 12, 2014

  • Jules UK

    Thanks C! I'm a little apprehensive; there was a lot of paperwork to read through, but it's well summarised on the Alopeciaonline UK website. There will be an online survey for us all to complete, in due course. Incidentally, there's a survey and opportunity for face to face interviews on www.survey.bris.ac.uk/nottingham/alopecia. It's a research study into everyday psychosocial experiences of alopecia sufferers, run by the University of Nottingham.
    C, I'm also looking forward to our get-together. If you'd like a contribution to the table, let me know! X

    Mar 12, 2014

  • Caro UK

    Good luck for tonight Jules. You'll be fine! Let us know how it goes xx

    Mar 12, 2014

  • Debs

    Jules thank you for representing us at the conference. X

    Mar 12, 2014

  • claire

    Looking forward to meeting all you ladies next weekend 22nd. Just wondered what the arrangements are and how will you let me know the postcode. many thanks Claire. 

    Well done Jules for undertaking all this extra work- looking forward to hearing all about it.

    Mar 13, 2014

  • Celia

    Hi Claire - I will e mail it to you through this site. Celia

    Mar 13, 2014

  • Jules UK

    Thank you, ladies, for your encouragement! The tele-conference was really interesting. As first contact between steering group members, it was about clarifying roles and responsibilities, agreeing the scope of the PSP protocol,(as outlined briefly on alopecia UK) and setting the agenda for the meeting in London in May. The ultimate aim is to identify questions about treatment unanswered by research to date, and to prioritise them in order to approach "partners" who could secure funding for targeted research. The whole process will take 14-18 months, and we will be invited to participate in completing surveys to help narrow the issues that concern us most. It's an established protocol that has worked for other conditions such as acne and vitiligo. The group has dermatologists, a trichologist, a psychologist, a wig technician plus alopecia sufferers.
    This is a bit of a ramble and probably enough for now. But I hope the process will produce real results in raising the profile of our condition and encouraging research!! Please have a think, in the meantime, about what survey questions would be important to us. The meeting in May will be about compiling the first online survey....
    Jukie x

    Mar 13, 2014

  • Jules UK

    Sorry, that shpuld read Jules!
    C, do you want to add this feedback to our agenda at our get-together and I could bring my paperwork to date?

    Mar 13, 2014

  • Celia

    Sounds good Julie - well done  !  Claire I hope you got the address for the 22nd.

    Mar 13, 2014

  • Polly UK

    Hi Celia, really looking forward to our meeting next week - please can you send me your address and also a taxi firm phone number, I will be coming by train again.
    Also are you still taking lymecycline and if not did you notice any changes when you stopped? I've taken the last tablet today of my 2 month prescription and my scalp has felt so good during that time that I'm concerned what will happen now..

    Thank you Jules for your participation in the telephone conference and the research sounds very interesting. Look forward to hearing more about it on 22nd.

    I had my eyebrows done at the end of January and I'm very happy with them, it's great not having to pencil them in every morning and they look so much better than I could ever do.

    Polly x

    Mar 13, 2014

  • Anne Louise

    Thank you all for the eyebrow tattoo feedback. I had my consult today and I will likely go through with it, once I get the courage up. The permanent nature of it puts me in a bit of a panic, yet I love the thought of not having to deal with makeup and swimming without looking like an alien. I started using Latisee two weeks ago, and even though it's too soon to tell, I am noticing some slight re growth. Would a tattoo hamper any potential re growth?

    Mar 13, 2014

  • Celia

    Polly I have just sent you an e mail on this site - let me know here if you don't get it. x

    Mar 13, 2014

  • Polly UK

    Got it thanks C xx

    Mar 13, 2014

  • Pam

    Celia - looking forward to seeing you on Sat Mar 22nd. What time are you expecting us? Would you like us to bring anything towards the lunch?

    Mar 14, 2014

  • claire

    YES A GOOD POINT WHAT WOULD YOU LIKE ME TO BRING FOR LUNCH?

    Mar 14, 2014

  • Jules UK

    Pam, I saw Rob, your hairdresser, today. He was so helpful! I've ordered 2 hairpieces. I'm looking forward to seeing your new hairdo at c's next week too.

    Mar 14, 2014

  • Jen S.

    Hi all!  I admit that I have been obsessed with this site the last week.  I had a biopsy last week that confirmed Wednesday what I thought was already happening -- mild FFA.  Really - is there such as thing as "mild-forever-hair loss"  Yea!  (sarcasm).

    I am having trouble getting past this.  You all seem to have adjusted pretty well.  How do I get there?  How do I accept?  How do I look in the mirror?  I'm only 43.  My 10-year-old son has been telling on a hourly basis how beautiful I am and how he'll love me forever.  My 12-year old son doesn't know what to think and my husband tells me that I am strong enough to get through this.  I am not sure I agree right now. 

    I had a series of shots around my hairline and am using Minoxodil 5% and Clobestal (sp?). 

    I want to fight this.  I don't really know where to start. So many things that "may or may not work" or that "work for a little while then stop".  Argh!!!  So angry.   I don't drink more than maybe a glass of wine a week, I don't smoke, I run six days a week (though haven't at all in the past few weeks of my personal pity party).  Why me?

    Help!  Advice?  Where do I begin? I hate going to sleep and I hate waking up to this every morning as well.

    Anyway, I promise I won't rant all the time.  I didn't expect to today -- just happened.  Regardless, I am so very grateful that you started this group, Celia. 

    For now, I will continue to linger on the site -- looking for hope and strength.  Take care fellow fighters.  Bye from Marietta GA.

    Mar 14, 2014

  • Jules UK

    Hi Jen, I'm so glad you found us too. This forum has been a huge source of support. I remember well that "screaming inside" feeling you probably have right now. I was diagnosed 18 months ago, having had FFA for 10 years now, as it turns out. I think we've all struggled to find causes and cures; you'll read about them here.... And it's good to feel you're doing something for yourself.
    I have only just reached a point where I can look at my hairline without squirming. I think hairloss is slower than I feared at first, and there's always the chance that it could burn out. It has certainly helped my outlook to know that a hairpiece is possible that can stay put and behaves like your own hair. For you, that might still seem a horrible prospect, and you may never need one. There are many degrees to this condition - but its unpredictability is so frustrating.
    Where are you? UK? Just be kind to yourself, as my daughter tells me! Listen to your family - they care about you. And have that glass of wine! Jules x

    Mar 14, 2014

  • MJ

    Hi Jen, I have two little girls, ages 11 and 8, and my little one is always telling me I am beautiful no matter what. I was so upset with my dx in December that I couldn't eat and became obsessed with all things hair related. I am still obsessed with everyone else's hair, and certainly have small moments of self pity, but with the help and strength from this group, I decided to take all the action I could to combat FFA. I am following the standard medical protocal, but I think the thing that has helped me the most is coompletely overhauling my diet and mindset. I started following Dr. Weil's anti inflammatory diet (learned about it from Debs) and started looking into alternative medicine. I started by reading Spontaneous Healiing by Dr.Weil and just did alot of reading from there. I decided that know one knows what triggered this, so there is no reason to believe I can't untrigger it! During the past three months, my focus has been on getting the healthiest I can thru diet, exercise, and breathing exercises. My head is in such a different place from where I was just three months ago. All the cosmetic options I have learned from these ladies has also reassured me that if I lose too much hair or my eyebrows, there are really good options available. One other point I will share with you. I had breast cancer four years ago and handled a mastectomy and reconstructive surgery much better than hairloss. Just so you get a sense of how bad I took this initially. You can and will get past this point too!
    MJ

    Mar 14, 2014

  • Jen S.

    Thank you MJ and Jules.  I can't tell you how much I needed to hear from y'all.  You are both spot.  MJ - I think I will look into the book.  I am looking forward to talking with you though out this.  Long day of tears and worry -- so, I'll write more later.  It's 10:00PM in GA.  Good night and take care.

    Mar 14, 2014

  • Celia

    Hello everybody.  I am still reeling from a very negative meeting with my GP 10 days ago.  He was very dismissive about any form of forum/they don't know what they're talking about etc etc.  He was very animated to the point where I said that I had to leave.  He felt that any info we have on this 'kind of forum' is probably incorrect etc.  I was very upset but managed to leave with dignity until I got to the car. I wonder if any of you have hit a GP brick wall ever ?

    Jules, I wonder if you might be able to type up an agenda for next Sat - my WORD facility is gone since I actually use it so little. Thank you in advance !

    Perhaps over the next 2/3 days those of you who are coming over next Sat might like to let us know agenda items.  Please, if anyone does not know directions - let me know via this site. So looking forward to seeing you all - wish we could be meeting up in better circumstances, but I will try to make the day pleasurable for you.  If there are any dietary requirements please let me know and I'll try to make sure you have whatever you need/like. xx C

    Mar 16, 2014

  • Jules UK

    How infuriating! I wonder how clued up this GP is on our condition and the range of treatment options we're faced with, none of which have any tested evidence to back them up. C, it's understandable you were upset.
    Of course I'll be pleased to type up an agenda. I'll keep an eye on posts here for suggestions. X

    Mar 16, 2014

  • Debs

    Hi C, I had a terrible experience with a GP at my practice when I was first diagnosed. It added greatly to the shock of the diagnosis and I wrote a letter of complaint to the practice manager. It is galling when this group shares valid medical info given to use by our derms and by CARF newsletters and other respected medical sources.

    It is very unprofessional of your GP to speak to you like this and he could have learnt a great deal about FFA from the ladies in this group.

    I hope you feel a better now after this unpleasant incident. X

    Mar 17, 2014

  • Celia

    Debs - I just read your post on Jen S' discussion.  Interesting we are both not taking the meds.  Lymecycline did not agree with me at all in that it gave me tummy ache each time after I took it.

    I won't go to the GP any more, I'll go to a different one.  Wouldn't you think that if they didn't know about a condition, their professional curiosity might lead them to find out ?  I guess they encounter this so infrequently................ x

    Mar 17, 2014

  • Pam

    Celia I cant believe your GP would be negative about this forum -  my local GP who specialises in dermatology thinks that the forum is an excellent idea, both to share information, and also as a support network.

    What time are we meeting on Saturday?

    Mar 17, 2014

  • Celia

    Hi Pam - look forward to seeing you and other ladies. Let's say any time from 10.30 on. Julie has very kindly agreed to put an agenda together and she said she would keep checking for any items that may be suggested here.  I would have done this, but my WORD has timed out...........  I hope this doesn't sounds too formal but I just thought it might help for the future to have some kind of focus.  I have half a mind to ask the GP to come along and meet us all, but,  actually A - it's a weekend and B - he probably is not so interested.   I know that Dr Harries in Salford attends a support group who meet regularly 'up there'.  I wonder if Dr Cheung might have some interest , perhaps next time round in 'the summer'.  Just a thought. x

    Mar 17, 2014

  • Celia

    Anyone who still needs directions as to how to get here on Sat 22nd - please let me know - here -  and I will e mail you on this site.  Thank you !

    Mar 17, 2014

  • Celia

    Am I still correct with this list for Sat ? Jules, Pam, Polly, Caro, Claire, Meme, Paula. Please,  if there are any others who would care to join us, starting from10.30am - you are very welcome.  A short way off the M40 - Junction 2. x

    Mar 17, 2014

  • Annie

    Hi all, just wanted to let you know that I received a buy one / get one free e-mail offer from DermStore for SmartBrow eyebrow filler.  I was able to get two for $24.95 + tax with free shipping.  The promo code is BOGOBLON for the blonde color.  I would imagine the other color codes are BOGO followed by the first four letters of the color description.  I don't know if this offer is available for everyone, but it might be a good opportunity to try it out.  By the way, I find the colors run a little dark, so the blonde color is perfect with my medium brown hair.

    Mar 17, 2014

  • claire

    Hi Celia just to let you know I am working overnight on Friday and finish at about 9.15am. I am about 80 miles away and the route finder says it will take about one and half hours. Will therefore be will you all just as soon as i can. Looking forward to the get together.  Claire.

    Mar 17, 2014

  • Celia

    Oh ! Claire !  Thank you so much for making the effort ! Just get here safely and we all look forward to meeting you.  You asked about what to bring - just yourself, please - you will have all made a great effort to get over here, and it will be worthwhile, I'm sure ! x

    Mar 17, 2014

  • Meme

    Hi C

    I hit the negative GP/Hospital wall about 10 years ago, LOL. Have given up with them. Find you lot more informative!

    Can I ask, how will you let us know directions and time for Saturday. 

     

    Meme x 

    Mar 18, 2014

  • Celia

    Have sent you details Meme - hope you get them and please let me know if you need more info. x

    Mar 18, 2014

  • Meme

    Hi C

    All information received, thank you. looking forward to meeting you and the other ladies.

    meme x

    Mar 18, 2014

  • Meme

    Sorry

    Meant to say can I bring anything and what time do you want to kick us out. My very unsubtle way of asking if you are planning lunch. LOL

    Just in case you are, please do not worry about me. I am a coeliac and lactose intolerant, in others words a complete nightmare to feed, so if you are panning anything I can bring my own, but I do not want to offend. It's just that I have learnt from experience that it is better to say up front than refuse hospitality on the day.

    Husband is driving over with me (over protective, bless him) and then planning to go to your local pub  (he's got it all worked out) to read his book. Think he's secretly looking forward to the peace and quiet.

    meme x

     

     

     

    Mar 18, 2014

  • Celia

    Hi Meme - yes, I am doing lunch - if you arrive any time after 10.30 that would be great.  I have no plan on how long our get together will last, but I'm sure your husband will enjoy the local hostelry !  Look forward to seeing you on Saturday.

    Mar 18, 2014

  • Celia

    Welcome to Valerie - we hope you find our group helpful with info and supportive.  Where do you live ?

    Mar 19, 2014

  • Valerie

    Hi All, joined your group yesterday. Been suffering from FFA for two years and currently taking Doxy once a day. No other medication prescribed by Dermatologist. Thinking of stopping Doxy as it doesn't seem to help much.
    I live in Birmingham so if there is anyone in the group who is local I would love to meet up.

    Mar 19, 2014

  • Celia

    Valerie - we are having a get together here at my home on Saturday - it will be our third and you are most welcome to join us.  I live just close to the Beaconsfield turn off from the M40 so the journey is easy.  There are 2 others coming from B'ham area.  It would be lovely to meet you./  I guess you don't know anyone else with FFA - it can be a lonely journey on your own.  Let me know and I will send you the postcode and details if you think you would like to do this - at present - there will be 8 of us including me.  I am making lunch for you all. x

    Mar 19, 2014

  • Celia

    Mandy, Jules and Caro are in the B'ham area.  Do you know how to receive e mails via this site ?

    Mar 19, 2014

  • claire

    Hi Valarie, Welcome to the group-I have only been a member for a few months but find the support fantastic. I have not heard of the drug Doxy before.

    Good luck-I like in East Sussex but used to live in Warwick. Claire.

    Mar 19, 2014