Replies to This Discussion

Permalink Reply by DeniseC on April 7, 2017 at 11:57am

Oh dear! Poor you. I know what it feels like ... I was told when I was in my late 50s that my all-but disappeared eyebrows were due to 'age'. Wow. That made me feel good, I have to say. So when I did start to notice my hair going, I just assumed it was yet another symptom of becoming ancient. I did nothing about it for a very long time, until my grandson said, while we were on a windy walk 'Nanna, you look like you are bald!'.

I tried to hide the whole thing for ages, but would lie in bed panicking, desperately hoping that my hair would come back again or that it was all my imagination. Of course, it wasn't, and eventually it reached a point where I told my sister and my daughter, then my husband ... in tears throughout. They were shocked, I think - not by my hair, or lack of it, but by my reaction. They had no idea how long I had been worrying about it all, or the extent of my feelings.

So then I decided to do something about it. And I ended up going to Lucinda Ellory - a hair loss clinic for women. They do the 'Intralace system' - it's a sort of net that is attached to your own hair, with a hair piece attached to it.

That was exactly a year ago. It wasn't cheap, and there have been some issues, which hopefully are being sorted, but it has without doubt changed my life. I can do anything at all - swim, go into high winds (nightmare beforehand), just anything. And that is worth an enormous amount to me.

I have to go back (London, about 25 miles from where I live) every five or six weeks to get the system adjusted, as it gets pushed up as your own hair grows, and every six months I have to have a new hair piece. So, as I say, it isn't cheap. But worth it.

I still hate the fact this has happened, but then when I see the health problems other people have, I know it could be far, far worse. It just makes me feel 'less' somehow. I am not a vain person, I have my own business which is hugely successful, and I am strong and well adjusted. But this seems to get to my core - it makes me vulnerable and weak, which is not something I am used to, or like.

Mostly I cope with that, and just ignore it all - much helped of course by the Intralace. But sometimes, it still hits. I sometimes look with envy at people my age with beautiful thick hair. But then I think of all the ways they perhaps might envy me and I think, really, my life is not that bad!

FFA is a bloody awful condition. And you have every right to feel devastated. All I can say is that I understand that, but also truly believe you will get through these initial, terrible feelings. Find a solution that is right for you, whatever that might be, and get on with life. I bet your daughters would say the same thing - mine did for me!

Good luck - and keep smiling (or try to at least). It's better than crying. And - another thing I truly believe - stress makes FFA far worse. So many people have referred to this on this site. There is plenty of research now to show how laughing brings about an internal chemical reaction that reduces stress and increases positive health outcomes. So laugh! (Easy to say, not so easy to do. But if you don't try (for that, read, 'If I don't try) then I will never know!)

Denise x

Permalink Reply by Dee on April 7, 2017 at 12:06pm

I feel so bad for you and COMPLETELY understand as I would through the exact same thing a few months.   First of all know that there is hope.  I've consulted with numerous universities and physicians who specialize in FFA and there are some treatment plans that can help.   As an example, I've started using Latisse on eyelashes and eyebrows and they are already growing back.   There are a number of both natural and medication type treatments I've started that are helping.  Do NOT give up.   In my experience, the first month of being diagnosed was the worst as I knew nothing about the disease and did not know where to begin.   I had anxiety, depression and even panic attacks.   All much better now since I've started on treatment plans and have better understanding of all of this.  I will share more detail with you when I'm home for the weekend and have some time away from work.   Hang in there.

Permalink Reply by SandyA on April 7, 2017 at 12:14pm

So sorry for your diagnosis, AnnieMay. This disease is just like any other where one needs the time to grieve and adjust.

Fortunately, you found this site and don't have to go thru it alone. Because we all are here trying to cope with FFA we can understand/empathize how you may be feeling. Sometimes just venting feelings in writing can be extremely therapeutic.

Hugs to you.

Permalink Reply by Christi Q. on April 7, 2017 at 1:05pm

I am 58 and was diagnosed with FFA a few months ago.  Yes, it is heartbreaking.  The first couple of months I woke up crying every day.  Would have horrible dreams about it.  I've always been known for my thick, shiny hair so I guess it was a double whammy.  Anyway, I am just trying to save every single hair I have left now.  The Rogaine mousse formula gives a little bit of texture to the hair I have left so that helps a bit.  You're not alone my dear.  Hang in thee!

Permalink Reply by AnnieMay on April 7, 2017 at 11:53pm

Thank you all SO much for your messages. You have no idea how much it means to have your support and understand that I'm not alone in this journey. I think this hit me even harder because of the other life stresses I've been dealing with (anxiety issues and my sweet dad is dying from leukemia) and it just didn't seem fair that I had to deal with this too. Again this is a lot to get my head around and it will take time. I know many people that are dealing with so much more and I have nothing to complain about but I have always been a confidant, take charge, in control person and this took me down to my knees. . .one day at a time. . .

Permalink Reply by Minter on April 8, 2017 at 3:56am

AnnieMay, you aren't alone, we are all here for you.  I am 52 and was diagnosed last summer, though I think this has been happening for some time before I realized that a receding hairline and thinning hair are NOT part of getting older!    

It is somewhat of a blow to come to the conclusion that losing your hair can take away so much of your confidence and well being- when I was first diagnosed I was like, ehhh I'll shave my head, I'll be fine, whatever- now I avoid mirrors, or being in photos, I want to cry when the wind blows and I am looking at my budget and trying to  figure out how to afford a hair replacement system from Lucinda Ellery's!  But, saying all that, I am also trying to take care of myself by exercising, eating well, using supplements and oils vs the medications that were prescribed that made me so ill, I am also treating myself to some "touchups", like a good haircut/color, a bit of botox and good makeup.  None of that will help when the wind blows though, but it does still help- if that makes sense! 

Permalink Reply by DeniseC on April 8, 2017 at 5:41am

I so agree with everything everyone is saying - one of the biggest issues for me was my own reaction. It was SOOOO not what I would have expected. Had someone asked me before all this how I would react to my hair disappearing, I would have come up with some bold statement all 'I am more than my hair' and so on. Ha! Little did I know.

But like Minter, I am sure that looking after myself makes a difference. And even if that is simply psychological, that in itself reduces stress which is, I am sure, a major trigger..

It's a glorious day here in England. It is very warm and sunny, with all the blossom and the bluebells out, and new green leaves bursting forth. Lovely. So I am determined to be positive and focus on the good things, not my flippin' hair. At least for today!

Permalink Reply by Marytee on April 8, 2017 at 6:52am

Hello AnnieMay

I am sorry that you have this diagnosis and i think your reaction is to be expected

I was diagnosed with FFA two years ago but looking at photographs had it for a few years prior to this. I can't believe I looked in the mirror each day and didn't see it! Other people did and didn't say anything

I agree with others that stress makes its worse

I am taking meds now and cream, I don't know if they make any difference or not (two years)

The things that upset me the most were loss of eyebrows and eyelashes. I had my brows tattooed a year ago and the difference is remarkable, it has made a huge difference to my confidence

I will have them bladed next as the results look so natural

I have had individual eye lashes attached to the stubby ones that i have on top and the results are good. With eyeliner my eyes look ok now. It was only when i had these treatments done did I realise how poor my eyelashes were

Regards my hair, my hairdresser shapes it around my face to make it appear fuller. She also keeps an eye on it to make sure it isn't deteriorating further. It makes me feel physically sick to see the bald band around my head but I know that I m doing everything I can cosmetically to help

Keeping positive and a sense of proportion is important, but not always easy to do....

I have lost my other body hair so not having to shave legs and underarm i suppose is a bonus. I tell myself its not life threatening, there is far worse and whilst all of that is true............its not easy

Good luck and keep in touch  xxx

Permalink Reply by Jacqui on April 9, 2017 at 12:21am

Oh AnnieMay I am so sorry you have this crappy condition :(  I have been diagnosed 2 years now and some days I feel ok but some days not so much.  It just sucks.

Now you have a definitive diagnosis you can get some facts though I guess.  And yes wigs are an option and there is some great information in this group about them.

Give yourself some time to take it all in and this group is a great place to vent and ask questions so I am glad you found us.

Jacqui

Permalink Reply by somad on June 9, 2017 at 9:26pm

Hi,

I am close to wig category.  My ropey veins are out and the few pieces of hair left make me feel like golem!  So sad.  I am 45 and need something that isn't too hot because my climate is hot and humid.  A tall order.  Does anyone have recommendations?

Thanks,

Kristen

Permalink Reply by DeniseC on June 10, 2017 at 4:08am

Hi

I have had an Intralace system from Lucinda Ellory (see their website) - it's great in terms of getting back 'your' hair and enabling you to feel more or less normal again. However, I would not recommend it in a hot and humid climate as whichever way you look at it, it is something plonked on top of your head and unlike a wig, you can't take it off when it gets too hot. 

I haven't had a wig, but my friend has and by the end of the day she is desperate to get the thing off her head.

Interestingly, and for the first time since I got the Intralace, I have thought that were I younger (I am in my sixties) I might now consider going completely bald, with a selection of wigs to use when and if I chose. Never thought I would feel that, but it seems to me that all the alternatives are expensive and a 'faff' (good English word). Even the Intralace, which is probably less fiddly than anything else, as it is attached to your own hair and looks very natural, requires six-weekly trips to have it adjusted, and a new piece fitted every six months or so. 

I think you have to be brave to go bald, and it certainly looks better if you have a good-shaped head, but at least it stops this endless battle to look as if you have 'normal' hair. 

However, for me, that isn't the answer. I feel too old - with no hair I would definitely look like I was ill or ancient. But if I were young again? And this whole experience has certainly changed my opinion on what is beautiful and what it means to look - and feel - different.

What is of real interest to me is how that learning has developed since I found my solution (the Intralace) - when I had it done, just over a year ago, I thought that was that. Sorted. And it is in the sense of I can't imagine doing anything else now. However, life would be so much more straightforward if I just accepted my hair has gone and I got rid of the remaining (thick, untouched) locks at the back and embraced a new reality of no hair.

A British Olympic cyclist - Joanna Rowsell Shand - has alopecia. She has a naked head when she cycles, but then wears a wig when she is not cycling. She doesn't appear embarrassed or uncomfortable either way. And maybe that is what we all should be, and your solution?

But it's an enormous step to take! And one I am not sure I am ready for.

So not a recommendation - sorry - more a reflection.

Hope you get more useful replies!

Denise

Permalink Reply by philnatural on June 16, 2017 at 12:30am

Hi. I'm Phil. 42 years old. It's been since Xmas 2016 since my hair started falling out. Devastation yes. Depressed at times yes. It's hard we all know it. I don't have one hair on my entire body. Crazy. I feel like a giant new born.I'm not trying to be funny. But I am trying to lighten up on myself. I hope you do too. Been reading about it on the net ever since including this site. Some people say xeljanz drug mostly used for arthritis bells hair regrowth. Some say Chinese meds/herbs homeopathy. Some say strict AIP diet and exercise. But no one has really said they got 100.percent results or we would all know about it. I have not shopped for wigs because we'll the bald look isn't too bad but the eye brow eye lash thing makes me feel uncomfortable. So I might try fake brows and start there. Another idea was to turn into one of those guys that has tattoo's all over his head and face. I know we look like Chemo patients but the reality is we are not and thank god for that. Hard to find bright sides in a dark world but the light comes from within. Sorry if I'm using you to cheer myself up as well as you. Blessings from California.