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Comment by Plf on June 8, 2018 at 8:06am

Thankyou so much curly K, hope there is something new but also enjoy the warmth & friendship of the conference, your positivity is amazing

Comment by CurlyK on June 8, 2018 at 7:58am

Good morning ladies! Today starts my adventure to the CARF conference! I am beyond excited to learn and meet new friends!!!

I have everyone’s questions typed up and I intend to post a daily update in the discussion forum section of our board. 

Hugs to all and I’ll post something later tonight!

Comment by Miss Mymble on June 7, 2018 at 11:23am

Hey ya all. I'm (unfortunately) a new member of this sisterhood of the mystery frontal hair loss.
I've had frontal hair loss for about 5 years, but just newly diagnosed by a dermatologist in Germany (I'm from Denmark). He only wanted to take a biopsy if I insisted, as he had no doubt by just looking at my scalp that I indeed belongs to this dreaded FFA-club.

The doctor gave me some steroid ointment to use on the follicle twice a day and then come back for another consultation in about three months and then maybe look into the stronger drugs.
I've used the cream but it makes my follicle all red and itchy so I've stopped again.

Like many of you, I'm really hesitant to use the stronger medication for this. Especially because it doesn't cure it and there's no guarantee it will even slow the progress down. And somehow it just doesn't seem logical to me to fill my body with chemical when clearly something in my system is already off. - But I may change my perspective on this over time..
I've tried Minoxidil about a year ago. It gave me a rapid heartbeat and headache so I stopped. It actually didn't do that much for my progressive hairline and I also hated the concept that this would be for life. So it felt more than ok to stop that treatment.

The dermatologist told me that FFA is not an auto-immune disorder. Which really confused me as I thought it was?? I didn't have the time to ask him more in depth about this.
However I still believe there's something in ones immune system that is off and for some reason attacks the follicle.

So I'm trying to eat healthy and thinking about not to add inflammation in my body with the food (without being fanatic..life is tough already so no reason to make it tougher by denying yourself the pleasure and joy from chocolate and icecream;).

I've just started to take Moducare three times a day. Hopefully it will help my immune system to be in balance (if it is off - I don't know if it is and it seems like nobody does..oh well).
I've also just started to use CBD/CBA-oil to my hairline (thanks for the tip, Robin).
And for a long time I've used castor oil on my brows. They are still almost intact.
I've just bought a dermaroller and I'm debating with myself if I should give it a go on my hairline.
I've also just purchase a Virulite for cold sores and I'll probably try to use it on my hairline just out of curiosity. As it says the light will help the immune system..
I rebound on a Bellicon as a daily activity to help with lymph-drainage and to get the blood flowing.. Well, that's my adult excuse, really I do it because it makes me giggle.
I also take turmeric daily for its supposedly anti-inflammatory benefit.

I recently read an article about using Low Dose Naltrexone to Lichen Planoparis. As LP is thought to be related to FFA I'm really curious if some of you have tried LDN and how it worked for you?? I'm thinking about asking my doctor if I can try it as an alternative to the stronger drugs he suggested.

I really hate this FFA as its so much more than just hair you're losing.
This is really not the scenario I had seen for myself and my beloved red curly locks (ouch!). I've done my fair share of grief and is still in the process of taking this new reality in and to just accept what is. Some days I manage pretty well and have fun with scarfs and headbands, other days I have a big knot in my stomach when I think about it and feel so so sad and unreal about it (what the heck is happening in my body?!) and well other times I reach a state of denial. Which I think is actually ok as a coping strategy for as long as it's possible..
It's been so comforting to read all your posts. To know I'm not alone and know other women (and some men) are going through this mystery and are willing to share their journey has been really helpful to me. So thank you for being here!

Comment by Halfbakedwho on June 7, 2018 at 9:51am

Me - I got bangs cut into my curly long hair which seems to hide the scrappy-holey forehead thing a bit better. I moved last September and haven't yet found that complicit-intimate hair person who can accompany through this freakish journey. So my bangs were cut by old hair person who is next to my office (where I commute to work three days a week, two hours from home. Yes, yuck)

Comment by Minter on June 7, 2018 at 8:07am

@Airam, that would be so cool to have a hairdresser come to my house!  But I am in a rural area and there is no such thing round here :-(  

Actually, my hairdresser and I decided yesterday to try making my roots a shade or two darker then is normally done and she did more "strategic cutting" for the front of my ears to make it look like my hair is "really" there and it looks very good.  Having the darker roots makes my hair look thicker and cutting "sideburn-ish" sides in front of the ears hides the loss- the powder on the sides and my part helps tremendously too!

This is all new to her also, so there is some trial and error, but each time in the chair we both are learning a little more on the smoke and mirrors effect of trying to disguise this hair loss as long as we can.

Comment by Minter on June 7, 2018 at 7:59am

@ Sad in Chicago & @ CurlyK, I love, love, love your attitudes!

I try my best to be the same, but sometimes this stupid FFA can get me down- but I totally agree, no point in dwelling on and wasting time and energy and money on something that cannot be changed, it is time to move on, make the best of a bad situation and live life, there is only the one we are given and it is not like we can come back and do it again better next time around. 

Comment by Airam-FFA on June 6, 2018 at 5:25pm

Hi Minter

I have a mobile hairdresser, who comes to the house to do my hair - so I am no longer subjected to the ordeal of others seeing my lack of hair at the front of my head.

xOx

Comment by Wyobalance on June 6, 2018 at 2:08pm

I look forward to meeting up at the CARF Conference CurlyK.  I can't imagine my scalp would tolerate bonding as it reacts to the little clips when trying on a topper.  Will you be at the Show & Share after lunch on Sunday to share info.  My taped on Mini Hair Pieces in the front get me though life without thinking about "it".  But I realize that is not the final solution as "it" progresses.

Comment by CurlyK on June 6, 2018 at 1:06pm

Sad, I couldn’t agree with you more!! There is something to be said for the “acceptance” stage of grieving. After years of lotions, potions and powders, I finally got an official diagnosis. Once I had that, I had a major cry and then decided to invest in a bonded hair piece. Best decision ever made in regards to my FFA. I feel like my old normal self with hair, I get lots of compliments and no one knows it isn’t my hair unless I choose to share my story. Am I still bewildered as to how I “got” this thing! Yep! Do I still feel sad? Some days, yes. But I had to move past the grief and live life the best I can! I have a husband, step kids, grandchildren, and elderly mom, a great job - all who need me at my best. So I do what I need to do to take care of my health and my hair and move on. Life’s too short to dwell on what we can’t control. We have to find our peace. Sent with complete understanding and love for all who struggle with this crazy FFA. 

Comment by Sad in chicago on June 6, 2018 at 8:45am

Ladies, forget the meds and trying to understand. I cannot fully say I have all good days but since adjusting to my wig which I have had for about a month now I am moving forward better. Here is why. I am not spending time dwelling on this, taking stuff that doesn’t work, working with clip in pieces that yes, do look good and did solve the problem for awhile , but were not as comfortable and required changing, adjusting, and eventually taping, as the loss progressed and changed.  I have a blend of synthetic and human. Wash and wear as it were. Put on in seconds. Sleep in it if you need to (like when grandchildren do sleep overs!).   Wake up and put it on. Lightweight, fitted (I have a great hairdresser / wig, hairpiece person, who hand sews it to fit perfectly). So, my best advice after dealing with this for four years now, take your money and time and find a good person like I did to help you look and feel like you. I certainly cannot say this is the 100% solution but it is what it is. Yes, I am still sad and incredibly frustrated this happened to me. But.....   in the meantime my hairdresser and derm are working to get me reimbursed through my insurance too. 

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