Replies to This Discussion

Permalink Reply by DeniseC on June 13, 2017 at 8:33am

I suppose the answer to how do I deal with it is .... sometimes good, sometimes bad. There are times when I am able to put into much-needed perspective. I haven't got something life-threatening, I fundamentally believe in the value of difference and in not judging people by the way they look, I am not vain, and I am a generally strong person who has very much to be thankful for.

But then there are times when I feel so hacked off by it all - and so despondent. Even with a solution (I have an Intralace System which certainly has made things much, much better) it is still a faff and something I have to take account of. And it costs. 

The sorry-for-myself, woe-is-me inevitably kicks in at times. We are all only human after all!

But I suppose I know that stress makes everything worse, so I try to stay positive.

And keep smiling! (Admittedly through gritted teeth!)

x

Permalink Reply by DeniseC on June 13, 2017 at 11:38am

I have an Intralace System from Lucinda Ellory. I, too, have lots of hair from the crown to the back and to the sides, although the bit above my ear is disappearing. 

The system is natural hair which is attached to your own hair. It looks great - very natural - and stops all those 'I can't stand the wind' moments. But it is expensive and requires five or six-weekly visits to have it adjusted as your own hair grows and pushes it up, and a new hair piece at the front every six months or so.

I had my eyebrows tattooed some years back but that has faded, so in two weeks time I having them microbladed. And I am perfectly relaxed about no leg hair!! 

What gets me is when I do tell people I have FFA, they respond by comments which clearly think this is losing your hair as you get old. NO IT ISN'T. It's an autoimmune condition which could - and does - strike anyone. Increasingly I read on this site of women far, far younger than I, with the condition. 

Why that should bother me I know not - perhaps it's because it is something specific to direct my anger onto! 

But mostly, I just get on with my life.

I don't want the most important thing to impact on me being my hair, or lack of it. There is enough in this world to get het up about - what a time for both UK and US politics! - without me internally ranting about this. Smile Denise, smile.

Permalink Reply by AnnieMay on June 13, 2017 at 1:02pm

I'm so thankful to talk with all of you as this is such a lonely thing to deal with. I have always been a very confidant, strong, take charge, in control person. I honestly had no idea that I would have had this reaction. Before I was diagnosed I think about how I would have reacted if someone had told me they were losing their hair?  

I guess for me it's bigger than losing my hair because it affects so much more? I would be happy to shave my head but I can't even do that because I would look so frightening! Feel like I've aged 10 years. 

I live in Oregon and we don't have Lucinda Ellory. Not sure where I would go for an interlace system? 

And I feel like pampering myself and doing whatever I can to look as good as I can. Has anyone had any cosmetic procedures done? I had already been thinking about a mini facelift but now I'm worried that it could affect my FAA? 

It's hard to not have ANY control over something. Do I start a new medication and which one?I feel like I need to be doing something!

Permalink Reply by Camille on June 13, 2017 at 2:02pm

Dear AnnieMay,
I just want to say I'm sorry you feel so low today.
This is the fourth autoimmune disease for me,all rare.So it's hard not to feel the unfairness of yet another. I cry a lot! I was a Grief Counselor but none of my expertise helps me with this. I will say to you that ,regarding your sister, I suggest you tell her what you need from her and what doesn't help you. Our loved ones just don't know what to say or do generally, when we are grieving losses.
Thankfully, we have this forum!

Permalink Reply by Camille on June 13, 2017 at 2:11pm

Dear AnnieMay,
I just saw that you live in Oregon. I live in Vancouver,Wa. I would be willing to get to know you better if you'd like. I was diagnosed a month ago, so I'm new to this. Can't find any support groups in Vancouver.

Permalink Reply by Minter on June 13, 2017 at 4:41pm

Right there with you AnnieMay, every morning seems like a bad hair day now- what used to take no time at all for me to get ready now seems to take for-EVER.  I still have eyebrows (barely, but they are still there) so that takes time to pencil & powder them in, I am now noticing my eyelashes are thinning, so there is mascara and eyeliner and powder to try and make them look better.  

And. Then. There. Is. The. Hair. , sigh.  I used to pretty much let my hair air dry and off I'd go with barely a glance in the mirror! Now, on any given day, it is one or all of the following, straightening irons, curling irons, hot rollers, volumizers, powders, hairspray, bobbie pins to pin my hair over my ears, it never ends.  I clip the hair over my ears to hopefully disguise the no hair in front of my ears/temples if the wind blows, well not even when the wind blows, just regular walking makes my hair go back- I see it in the windows as I'm walking to my car and want to cry.  Now that it is hot weather it is even worse, oh and yes, the "scalp sweating" always fun to deal with, to start dripping for no reason and yay it is summer time so it will happen even more and to top it off I know my hair now has a different texture from before this.

 I have been bouncing back and forth about the interlace system myself, but it costs so much and to be honest, with the heat and my sweating, I might lose my mind having something stuck on my head all the time! I did get myself a topper a month or so ago and I am going to go soon to get it cut and colored to match my hair soon, hopefully that will help on the very bad hair days.  In the meantime I often think about shaving it all off and wearing a wig, but even if my hair was shaved off it would still look weird with the stupid bald band in the front.  Or even get the sides shaved with that faux mohawk thing haha! Sigh, I'm too old to pull that look off :-/

But what is probably most frustrating is when people say it doesn't look that bad, it's fine, what is the problem, etc... then I feel like I am just being vain, but the thing is I know it looks bad, I see it every morning when I get out of the shower and it is wet, I see it when I am trying to arrange my hair to hide what is gone, they see it after I have done every magic trick I can think of to disguise my hair loss.  I am just so tired of having to deal with this Every. Single. Day. and knowing I will have to deal with it for Every. Single. Day. For. The. Rest. Of. My. Life. It is an awful thought, but sometimes I wish it would all just fall out, that would be easier to deal with then this creeping band of baldness.  

Thank you ladies for being here, this FFA is hard enough, but I couldn't imagine trying to deal with it without you all!

Permalink Reply by DeniseC on June 14, 2017 at 11:05am

Oh yes - to all of that, Minter. The scalp sweating was AWFUL - what hair I had at the front ended up plastered down. Horrible. And embarrassing. That was what really pushed me into getting the Intralace really - I ran a Business Week at my local school and spent all week dashing into the loo to mop my brow, and I couldn't bear to do that again.

Interestingly, I don't seem to get that with the Intralace. No idea why not, at all. And it's not just that the hair is mopping up the sweat - it's not. Strange. 

The big issue I am now coming to terms with is that although I have a solution, it is, as you say, expensive - and it is for life. Argh! Is this the best way for me to spend my hard-earned money? At the moment, yes, but I just wish I was brave enough to shave everything off and go bald.

However, as I have said before, I am too old for that to be anything other than a horror look, I fear.

Permalink Reply by AnnieMay on June 14, 2017 at 11:24am

Just hate it. I have the sweating too. I really started to see a change in the texture of my hair too last summer. It started getting thinner and it feels like straw. And my skin has changed. Ugh

Ive also been such an active outdoor person too. But this has changed what I feel comfortable doing which makes me so mad. I can wear a hat to a football game or on a hike even though I hate hats. But even just sitting at an outdoor restaurant with my sister the other day was so stressful because the wind was blowing. We were invited to have dinner on a lake and take a boat ride but I didn't go. I hate that this is changing my life. 

I am 60 and I hear women talk and say someone looks so good for their age or did you see her, she isn't aging well. And there is a judgment about that. I know people that are dealing with so much more and I tell myself that this shouldn't matter so much but it matters to me. So thankful I have you ladies to talk to

Permalink Reply by DeniseC on June 14, 2017 at 11:29am

When I had the Intralace fitted lots of people had no idea what was different - but as one they said I looked younger. It's very dispiriting that at an age when you are ageing anyway, you have something that you feel makes it worse. 

Cameras are a nightmare too - I avoided them like the plague. Not just older than I feel (like you I am active and healthy other than this), but also balding. ARGH.

Permalink Reply by Liz Lov on December 28, 2017 at 6:44pm

Hi Minter,
I can so relate when you say how hard to is to see yourself in a mirror. I had a total meltdown a couple of weeks ago when my husband was away for a few days and I was walking around the house without a hairband on, I kept seeing this freakish looking woman in the mirror! How I cried!
Anyway, to cut a long story short, I started to wear a gorgeous wig a few days ago and I'm so so happy with it. As my daughter says, I feel like I've got my mojo back!
Liz

Permalink Reply by Bonneygirlrn on June 13, 2017 at 7:22pm

I too have FFA. Diagnosed about 5 years ago. When I was in my 30's. I have seen 4 dermatologists and thought I finally found one who was familiar with the condition and might help. That was 2 years ago, and I'm realizing there really is no help. I recently had another biopsy done. This time for the tiny bumps that have taken over 75% of my face, as if losing the hair wasn't bad enough! The answer is yes, the bumps are due to the same inflammatory process. However, no treatment has been proven successfull. Nothing to even try. My derm sounded annoyed when I asked is laser or accutane something I could try? No sorry will let you know if something new is found. Really!!!cant wait to get the bill buddy!! Ugh. So for now I'm going to try various essential oils geared towards inflammation. What doesn't kill you makes you stronger right?

Permalink Reply by akb on June 13, 2017 at 11:06pm

I just want to add a strong "WORD" to everything everyone has said! Mine is still coverable with my bangs (and I recently cut my hair short, so I have a bunch of my own hair to incorporate into a topper or wig when the time comes), and occasionally I have friends try to insist that I am "imagining" it, which is infuriating (I HAVE A DIAGNOSIS BUDDY).

I also share the frustration that several of you mentioned -- I am probably going to shave my head and get a nice wig made for sometimes when I can no longer hide the FFA with my hair, but I am definitely concerned about how weird that might look. Does anyone on the FFA forum have a shaved head? (Every so often I comfort myself by watching this video of Lisa Marie Todd, who looks gorgeous. http://www.marietodd.com/blog/why-i-shaved-my-head/)

This condition has caused me to make a bunch of healthy life changes, but . . . the "progressive and irreversible" part I think really does a number on all of our mental health.

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