Hi Sad in Chicago. My intralace is made from real hair. The intralace system I have is supposed to last for 2 years however I will need panels changed throughout that time. I have already had 3 panels changed as I wanted longer hair. I have also had the parting changed once x

Hi

Mine is the same as Liz's - real hair. And I, too, was shocked when I watched them attach the panel as it really showed me how much hair I had actually lost.it went so ery, very slowly, and my hair at the back of my forehead is thick, so I could (up to a point) disguise it, and deny its extent, even to myself.

I haven't yet had to have sideburns, but suspect that will come. My hair has gone from there, but not so much that the 'new' hair (the panel) cannot cover it.

Strangely, the sideburns missing really bother me. Not sure why. My hair is short, so they show more - and I was hyper aware before I had the Intralace system fitted. I have/had a long time habit of tucking my hair behind my ears, and of course, when there is no hair at the side, it shows.

Anyway - promise that once you have your new hair, you change your name to 'Happy in Chicago'!

Denise

Thanks all, stay tuned..................!

Hi Ladies. I know there is another thread about blood tests but I had difficulty adding to it so I thought I would post here. Today I had an appointment with Dr Christos Tziotzios at Guys Hospital. He needs more blood samples. By providing blood samples we are helping the research to continue. This may lead eventually to more specific treatment and perhaps even prevention of FFA. This might not be in time to help us but may help our children and grandchildren. Please help if you can :)

I emailed Dr. Tziotzios and it seems we need to travel to London and are not able to send specimens from the States.  That's too bad, as it would really help to attain the number of subjects that he needs.

MnM I would think a mom/daughter with FFA would be of interest to the geneticists. I'm in touch with quite few folks with FFA through Carf, and only met one woman at the Chicago Carf conference two years ago that said her daughter was beginning to lose her eyebrows.  Others have no relatives with it.   Interesting....

When is the next Carf conference....do they have a website?  I just found out about them and am here in Chicago and would like to explore.  Thx

The conference is June 3-5.  Register at www.carfintl.org.  They are held every 2 years.  I went to the Chicago one 2 years ago (darn you missed it) and it was impressive.  120 patient attendees, and about 12 docs were there

MJ, I will send photos too.

Denise

Gai, and others unable to attend the Carf Conference.  Another professional conference that I attend offers a DVD of all presentations at a reasonable price. Too late this year, but I will ask Carf it is something they can consider in the future.  Or, maybe some type of go-to-meeting online option.  Will see...

Ladies local to Beaconsfield Junction off M40-please let me know which dates you might be free to come for lunch and to catch up

  celiareeve@hotmail.com

I am looking at May, June.

I would always see those dates that fit s all. It would be from about 11 am until 3 pm

Best wishes. Celia

Ladies, after my reports of being so hopeful about the hair growth I was having with finasteride, I must now report that I am having very unwelcome side effects that I believe are attributed to finasteride.  I have experience rapid weight gain.  I say my endronchrinoslogist yesterday because I have also experienced blood sugar imbalance due to the sudden weight gain.  I have no other reason to account for the five pounds I have put on since February than the finasteride which I started in January.  I have not changed my diet and I have actually exercised more recently than I had before February.  Sadly, I will stop taking the finasteride.  

Sallylweiss,

I am so sorry. I do not use anything for this condition. I believe that it has subsided. The injections that I had at diagnosis caused a lot of hair loss at the spot and dents in my forehead so I am done. Luckily I have very curly dark hair which I pull forward very effectively and with a little black eye shadow at the hairline and hairspray, I am presentable.

Clearly, drugs are not the answer.....my derms (TWO) have assured me that some drugs "might be worth the try" but, it appears that FFA is absolutely irreversible.  Why danger your health and well being by putting drugs that are not known to really help in your body?  Not a good idea.  We all seem to be dealing with it best we can, let's stay healthy, eat clean, and take care too.

Weight gain  and blood sugar imbalance are observable.  Along with those who knows what else is going on in our body that is undetected.  Frustrating.

Hello Celia, I have been off line for a while on holiday in Mull and I refuse to take technology with me. Would love to come to the catch up but can only do June. 5th  to 8th. 10th, 12th to 15th, 18th & 19th and 22nd & 23rd. I am going to phone the chap in Cheltenham this week as looking at the photos of me on holiday really brings it home how much hair I have lost. I try not to look in the mirror to much.

Meme please e mail me on.   celiareeve@hotmail.com

Ladies we now have over 300 pages of comments.

I think by now many of us  have heard it all.

No nearer to a cure.

I know that had I not started this site within Alopecia specifically World some 3 years ago, I would not have been able to cope, so thank you all for your contributions..

Thank you Celia, for starting this site.  I don't contribute all that often, yet I have read and learned much here.

Thank you so much Celia. Thank everyone else for their participation.  I know that I am not alone. I have found a way to live with this for now.

I thought after reading some of the comments again that I would take the time to write a comment.  I take no meds as I do believe that my tipping point was all the various medications they gave me when I turned 65 but I also believe that there was something going on that let that happen.  I have actually read all the comments and have done almost everything that was suggested except for the drugs.  So I have changed my diet - 80 percent fruit and vegetable and primarily fresh - 20 percent protein - only bottled water - filter on my bath water to remove chlorine - natural chemicals in my hot tub - no fluoride in my toothpaste.  No face creams with retinol or spf only sunblock with zinc oxide.  Three years have passed since I had the medications - a pneumonia shot and a shingle shot and prolia for osteoporosis - I have taken milk thistle and some other vitamins which I really believe stopped my hair loss and after all this time those medications have finally cleared themselves out of my body as I have no more itching, sensation, hair loss or LLP - but this has all taken all of this time.  My amazement is that even though I have posted these results I continue to see so many of you with no results and so many of you continue to use the medications from the dermatologists that do not work.  The latest studies that have been posted on this site were about the skin creams - which I had used ROC and then Rodan and Fields which both lines have spf and retinol - great skin but my hair falling out and LLP are not a good trade off.  Passage of time will help many of you but if you do not stop using the creams and sunblock and make some vitamin and food changes you may continue the loss - is that worth it?  What do any of you have to lose by giving those things up?  In my book - absolutely nothing!  Most everyone on this site was already healthy and these things that I mentioned may not be all of the causes but they are at least a start.  Wishing you all wellness!

Hi Joy

I, too, have not taken any medication for the FFA, primarily because a diagnosis did not come for a very long time and I was told there was nothing I could do. I was also (erroneously) told it was my age (I was 63). However, I then went to a highly reputable integrated medical practitioner (he is medically trained, but realised early on in his career that mainstream medicine treats symptoms not causes much of the time, and to make a difference you have to look at the whole person, not the component parts). And he prescribed all sorts of goodies from Immiflex to boost my immune system, krill oil to reduce inflammation, various vitamins and minerals and so on.

Since then, I think the hair loss has stopped. It's difficult to say, as it has been so very insidious. I have also had an intralace system fitted (Lucinda Ellory Clinic - HIGHLY recommended), so feel better about it all in general.

I try to eat sensibly - but that isn't because of the FFA. I believe I need to do that anyway. And I don't use loads of chemicals on my skin - never have done (so the theory relating to sunscreen certainly doesn't apply to me).

For me, meds are not the answer and I feel I am doing okay without them.

But - if right at the start I had been told to take this or take that, would I have done, just for the chance of it all stopping? Probably. It was/is such a devastating diagnosis that at the time I would pretty well have done anything to stop it.

And I think most people are like that. They may be grasping at straws, but if that is all they think there is to grasp at, they will go hell for leather, especially as, for most of us, we have never heard of FFA, so rely on so-called experts.

I would be interested to know if there is a difference in approach by those 'experts' in the UK and USA. I certainly was told nothing could be done (I live in the UK), yet time after time on this site, I read about people who have been told drugs will at least stop the hair loss. So is this a UK/US difference? Or are people living in the UK prescribed the same drugs?

I think the most important thing for people to do is to do something. The feeling of being out of control of something that is so personally challenging is, I believe, one of the worst aspects of FFA. So if that something entails putting your trust in an expert who prescribes drugs, and you trust that expert, go with it.

But .... take control in other ways, too. As you say, Joy, eat sensibly, take supplements, look after yourself. And look after yourself emotionally as well as physically. As I have written several times on this site, FFA is an unfortunate condition to have - but it's just bad luck, nothing more. It doesn't make you less of a woman which is emphatically what I felt for a very long time. Find your own solutions - I hugely recommend the intralace system, but it isn't cheap and entails ongoing costs presumably for the rest of your life. But there are others - including, as one fantastic young woman posted recently, shaving off your head and going proudly bald (too much for me as a now 65 year old - I would look either desperately ill or an ancient crone).

None of it is easy. None of it. But if we can't do anything about the hair loss, then we need to live with it as best we can without it dominating every single solitary thing we do.

Don't let it beat you!!!

As Joy says - wishing you wellness!

Denise

Hello everyone,

I was diagnosed back in February and just went for a 3 month check. The doctor was checking the inflammation and keratosis that was present when he diagnosed me. He said there were only a few areas where it looked like there was some redness. The one thing that I took away from this appointment was that the inflammation is what causes the hair follicles to scar over. So to keep that from happening you need to control the inflammation and hopefully get it to go away completely. Then (I would guess) even if you have hair loss, where those hair follicles aren't scarred you could have hair grow back. I have not taken any medications (internally) have used clobetisol topically for the first month or so and have just completely changed my diet and am taking different vitamins and supplements that are known for decreasing systemic inflammation.  Only being 3 months into this I can't really tell if I still have hairloss, I had been loosing it very slowly for probably the past 2-3 years... but I do feel great and am keeping a positive attitude. Thank you all for posting...I don't feel so alone!

Carol

Hi Carol

I don't have any scarring at all. I have never had redness or anything - all I have had is hair loss. But I have been told emphatically that there is no chance of the hair regrowing. The follicle has been killed off and there is nothing to be done about that.

I was also told it was due to inflammation. In my case, I was diagnosed years ago with lichen planus, which is a chronic auto-immune skin condition. I had it primarily in my mouth and throat - horrible. And there is a link between FFA and lichen planus, so it is pretty clear to me that my hair loss is due to that.

I take krill oil, for the inflammation, and Immiflex, to boost my immune system.

And positivity helps enormously, I am sure.

Denise

Thanks for all the recent posts encouraging those taking a natural approach to combating this disease.  I am trying this too because I had early stage breast cancer and will not do any hormonal type of treatment such as Finasteride.  For me, the risks of the drugs currently used outweigh (what I see as) the low results most people report.  I did try Clobetasol foam for a time but it irritated my scalp, caused tenderness and dry mouth.  I still occasionally dab it on active areas. However, I am focusing on eating an anti-inflammatory diet (Dr. Weil's), am taking turmeric and vitamins, seeing an eastern medicine practitioner for acupuncture and Chinese herbs, trying to learn to meditate and exercising more.  The lifestyle changes have really been pretty easy because the hair loss is so motivating.  I was diagnosed in February and started all of this soon after.  I believe I am starting to see an abatement in hair loss.  I realize this could just be cyclical and not lasting, but I am hopeful and wanted the thank those of you who posted the encouraging words for natural approaches to controlling FFA.

Have those that are in FFA remission (or hopefully resolved), had a biopsy initially for diagnosis, and another biopsy confirming remission/resolution?  

I've lived "clean" most of my life (or more so than the average person, mostly organic, avoided toxins when possible), and still got FFA  (have used sunscreen).   I am excited for the study in the UK looking at genetics.

I did a very short trial of doxy & actos meds about 5 years ago = side effects.  No meds since.  Have lasered for a year.  My loss is slow, but continues. 

The question do docs in the US and UK treat FFA the same.  I expect so.  Carf is an international organization, so the docs collaborate.  

Yep, this is a difficult journey for us all, but hooray for those that no longer have hair loss!  

Can anyone point me to where I can find the research paper/information pertaining to sunscreen use and FFA/CICAL?  I can't seem to find it on the CARF website.  Also, is anyone going to the CARF Doctor Patient Conference in NOLA next weekend?  Thanks.

hi Isabel

I was diagnosed with oral lichen planus many years ago (15 maybe?), after misdiagnoses of throat infections (nothing like) and shingles.

The symptoms were a HIGHLY sensitive mouth and throat - I got to the point where I couldn't use normal toothpaste or eat anything vaguely spicy or minty as it was truly agony. I remember going to a Thai restaurant and asking for no spice at all. I then ate something that was mildly spicy and had to go into the ladies and cry.

Alongside the sensitivity were little blister type things - not quite blisters as they didn't pop or anything. They would pop up, be very sore, then disappear.

And - this is where the name comes from - a white/sometimes reddy - sort of rash in my mouth. It looks like lichen.

I was diagnosed by a dermatologist consultant at our local hospital. He took one look at my mouth and immediately diagnosed. I was told there was no cure and that the way forward was to manage the symptoms and try to avoid further attacks once that one had gone.

It's an autoimmune issue - in my family we have several conditions that all link to autoimmune problems, so we presume there is a genetic basis.

Lichen planus is fundamentally a skin condition - so you can get it on the outside of your body, or vaginally, or - as I had - in my gut. That was the worst by far, but the oral lichen planus came a close second.

The OLP in my throat and mouth took a long time to completely go, but (thank goodness) has never reappeared. The lichen planus in my gut has reappeared several times - once so badly I was admitted into hospital as an emergency as I was in so much pain. But - touch wood - I have been okay for a while now. I know the lichen planus stays in my body; I just need to try to avoid it flaring up.

The key for me has been to try to manage stress (hmm!), take natural products to boost my immune system, and get advice and support from an integrated medical practitioner (Julian Kenyon at the Dove Clinic - highly recommended). There is SO much more known about lichen planus now than when I first got it.

I am 100% convinced that the FFA is linked to the OLP and nothing at all to do with sunscreen. Both are autoimmune issues, both are skin related, and both relate to inflammation. Intuitively, I know it too.

If your mum has FFA and you recognise my description of the throat/mouth issues, I would strongly recommend you get advice from a dermatological specialist.

Good luck!

Denise

JLC, I'll be at the Carf Conference.  Will you be there?

Yes, Wyobalance, I'll be attending.  

I'll be at the reception on Friday night, and  also am a meeter/greeter Saturday morning 7:15-8:15  Yawn...  I look forward to seeing you!

You too!  I'm on the waiting list for the reception, not sure why they would limit it...I've wrangled my hubby with registration at 9:45 on Saturday and I'll be attending the discussions.  Quite a few interest me as I'm only a year into my diagnosis and still have much to learn.  See you there!  

Oh, darn.  I paid at the door in Chicago.  Maybe they have more attending this year?  I found the Chicago conference valuable.  Good that you are going early on in your diagnosis.  Being informed is helpful.  I'm going to be a NO tourist.  Leaving early tomorrow.  See you!!

I will be at the conference.  I look forward to meeting all of you.

Sally, I heard you were going.  Fun!

Oh interesting, Gittan, I am attending the Carf conference and my first question is to ask if anyone is using (trying) Otezla.   I'll let you know what I find out.  And let us know how it works for you.

Otezla was discussed, briefly, but it is so new (for psoriasis), I don't think it has been tried much for FFA.  The conference was informative, but not much new info.  It was helpful for patients meeting others with the same condition, and hearing how they deal with it.