Replies to This Discussion

Permalink Reply by Beez on February 23, 2018 at 12:16pm

Hi akb! The problem with knowing what 'stage' we are in with this damn disease is that many of us had it for awhile before we either decided it was time to see a doctor or even more commonly (as in my case) went from doctor to doctor before getting the diagnosis correct. I estimate I had it a bit more than two years before I nailed it down. So I began the shots at that point. It helped with the itching and some of the weird pains I had in my scalp, but really didn't seem to affect the hair loss. After a year or so I noticed the 'divots' starting and stopped the injections. I went nearly a year without them until this past fall when I had a sudden onset of some weird eczema type thing in my scalp which responded beautifully to the steroid injections. ( wish the FFA responded like that!)

I don't want to be a downer here, especially to the newbies....but I think what we all eventually discover is that this condition can wax and wane , with or without treatment. I tried doxy, plaquinil, steroid shots, steroid lotion, minoxidil and it sometimes seemed to be working and sometimes didn't. Just like when I am medication free. So I choose to stay off the meds because no matter what they tell you (pharma wants your money!) THERE IS NO CURE and all medications affect your entire body, even minoxidil. All medicines have side effects. Eat healthy, manage your stress, and love yourself for all the GOOD things your body can do for you. (I revel in the fact that my legs are smoother than a baby's butt after having to shave every day my entire life.)  That's all we can do. I too hate this disease, I fight the panic when I see 'new inroads' at the hairline, feel ugly at times and angry as well. But....life is short. I am choosing right now to live it fully and joyfully. I have no other choice. 

Permalink Reply by Plf on February 23, 2018 at 5:27pm

Well said Beez...at this stage no meds for me either...but being positive some days is hard..but to many great things to celebrate in life to let this horrible condition get you down

Permalink Reply by illustr8r on February 24, 2018 at 2:50pm

@Beez and PFl Thank you for your comments about being medicine free. I question whether I should have done more-like getting the steroid shots or trying Plaquenil-but my gut told me it was useless. The side effects are worrisome and exaggerated in some with kidney issues like I have. I still waver because of the anxiety this stupid disease causes but it is reassuring to know others are skipping the Hail Mary meds and making the best (ha!) of a bad situation.

it took me many years to get diagnosed. Would drugs have helped at the first signs of eyebrow loss? No dr took me seriously each time I brought it up-chalked it up to aging. So frustrating.

Permalink Reply by Liz Lov on February 24, 2018 at 4:40pm

Hi illustr8r
I also was late getting diagnosed and decided against meds that most likely wouldn't work for me anyway. I've lost so much hair it looks ridiculous! BUT THAT made the decision for me that I would wear wigs- full time and my goonness am I having fun with them. 

I also changed diet drastically, gluten free dairy free, exercise, vit D & B supplements.

Took several years to 'accept' the situation but accept it I have and I'm def moving forward with life.

Permalink Reply by Plf on February 24, 2018 at 11:06pm

Hi illistr8r & Liz love, great to have open dialogue, at the moment I am being brave..but also realise I am heading down the path of wigs and microblading eyebrows.  At that stage I look forward to your "wig wisdom" Liz, as I'm sure it is a minefield out there.  Liz, well done with dietary changes I hope that has been positive for your health..do you mind me asking did you have any gut symptoms?  Thanks again FFA support group so nice to know other people understand how I feel

Permalink Reply by Liz Lov on February 25, 2018 at 1:19am

Hi Pif,

Yes HUGE gut symptoms, bloating, not 'regular' etc. Diagnosed with leaky gut. I read as much as possible , great book is this one by Dr Michael Mosley " The Clever Guts Diet: How to Revolutionise Your Body from the Inside Out". Explains the digestive system so well . So much info on how important the gut is for health, immune system etc.

I figured that I can't do anything about the hair, I CAN do something about general health and the dietary changes have been easy to make and have made a big difference.
As for wig 'wisdom' , well that took a while, watched LOTS and LOTS of you tube videos on how to etc. Patti's Pearls is a great you tube channel. 

Main thing for me about wearing wigs is that I no longer cringe when I catch sight of my hair ( or lack of) in a mirror ;-) If I'm just at home all day I pull one on loosely. When going out I secure it properly. 

I no longer worry about trying to 'save' my hair or ' hide' it.

It's too late for that , so time for me to accept the new reality and get on with life ;-)

Those years were SO stressful and confidence draining , I feel like now I've got the old 'me' back again.

Permalink Reply by Plf on February 26, 2018 at 9:23pm

fab, will order book, yes overall health is very important..and feeling strong and healthy is the way to go.

Permalink Reply by sallylwess on March 7, 2018 at 4:48pm

I am in the same boat as you are.  I finally stopped reading all the posts on here even though I found them so informative and helpful, or at least insightful, in the early stages of finding out just what was going on with my hair.  I guess I was very hopeful that I would find the secret combination for stopping hair loss.  Nothing worked.  Now, I focus on living well and trying to make healthy eating habits just because that will help my health and my well being.  

I learned so much from wig videos, and then I took the plunge.  After wearing a topper for several years that stopped giving me the coverage I needed as I lost hair on the sides and at the nape, I jumped into wearing wigs full time.  I wear scarves, hats, headbands and such if I don’t want to bother with a wig around the house.  

I do agree that those years of chasing after a cure and trying to cover up the loss were exhausting, stressful, and most of all, confidence draining.  I also feel like I have the old me back.  I’m grateful.

Permalink Reply by Liz Lov on March 7, 2018 at 4:56pm

Hi Sally,

Def the way forward for me, it's too late for my hair.

I will live healthy and enjoy all the new looks I will wear.
Stress gone, I also have the old me back thank goodness

Permalink Reply by Plf on February 26, 2018 at 9:21pm

Hi Agneta, not brave at all, just working through the process of acceptance, some good days some bad, of course and in denial thinking that maybe I am going to be one of the lucky ones- and the disease just suddenly burns it self out and I won't lose anymore hair!!  I really think you need to talk to some one about how you feel, I know it won't change the progression of the disease but may be helpful.  I have seen a psychologist in the past for a work stress issue, whilst at first I was reluctant as I thought I could solve the issue myself, it really really helped me.  I still think that in the near future I probably will see someone so that I can talk freely and not feel like I am harping on/ obsessed  about the condition to family and friends.  That is what I love about this forum, I feel so supported.  Agneta talk to some of the women on this forum that are now wearing wigs, they sound very positive, and wigs have improved so so much now, even the option to have eyebrows microbladed, whilst it doesn't replace your lost eyebrows it is an option. I truly am not brave, I just despair that this condition is ruining your life.  Take care and keep up the posting, ask lots of questions, as knowledge re products out there to help us is great and gives me hope that when the time comes ..so be it it will be a wig and new eyebrows. Now I have gone on too long, take care

Permalink Reply by Liz Lov on February 28, 2018 at 7:38am

Hi Agneta,

I'm also so grateful to have this site.

I've struggled with this B*****.  ffa issue for YEARS, not knowing the cause, thinking it was only me, wondering why my own immune system was 'attacking me' etc.

It's HORRIBLE!

Most people just don't GET how tough this is, I'm surprised at the comments of your councillor, she should know better! I have 'bent the ears' of 2 of my close friends for several years but its SO hard for them to understand the effect it has unless you go through it yourself. I wrote a LOT about this in a thread here called ' Counselling, We are our own'. A LOT more of my story is there and it explains how this forum has been such a life saver for me.

Yes, there are MUCH worse issues to have and we are not ill as such BUT our identity is taken away and that is a tough one to deal with. We just don't look the way we are perhaps supposed to look! My own hair line now is SO bad I don't even let my husband see it, I wear a hair band all the time when I'm not wearing a wig. If I were to go out in public with no hair band and no wig ( which I will NEVER do) I would be stared at and I know that's not something I want to go through.

It has taken me years to come to terms with the way my appearance has changed, but come to terms with it I have. Finally!

For me, there is NOTHING I can do to bring back the lost hair but there IS a lot I can do to continue to enjoy my life and  health. I've changed my eating habits hugely to help my immune system cope with what life is throwing at it and I feel great physically.

Growing up, I was always the girl with the 'long blonde hair'  so it was always part of my identity which probably made it even more difficult. I never thought in my LIFE I would EVER have to wear a wig! But I MUST so I have made it a mission to find out as much as I can about buying a wig, wearing a wig, keeping it on etc.

This is the one I wear from the Ellen Wille Prime Power collection:
https://www.ellenwille.com/products/impulse-prime-power-wig-ellen-w...

I love it, it makes me feel like ME again.

I will experiment with different styles but so far, it boosts my confidence so much.

Agneta:
What to do at night? 
I wear a comfortable hair band
Grand children?
I haven't been presented with any yet,( hopefully soon) but I'm sure yours would love to see their grandma looking confident and happy with whatever choice you make?

I hope you find what works for you.
From your photo my own hair is WAY WAY worse than yours which made is easier for me to move to wigs but you will find what works for you and when you do, let us know, we are all struggling with this DAMN ffa but it's so good to know that everyone here GETS it and understands our issues!

Thanks to all here for your support, it means so much to me personally


Liz Lov

Permalink Reply by Jules Australia on March 1, 2018 at 12:05am

Agneta, I am struggling too. I experience the wierd scalp sensations, sometimes tender, sometimes creepy itchiness,and my hair texture has changed, feels awful. Besides ffa, i believe i have diffuse lpp and scattered all over scalp as i get really tortured looking shafts with small irregular bumps & twists along them (hairshaft disorder 'acquired pili torti'), documented as seen in cicatricial alopecia (espec. Lichen planopilaris)...loss back from front, temples all around ears & recently felt discomford either side of nape...loss has been progressively slow over about 5 &half yrs but after a couple of years of much milder pain & only very very slow loss, it flared ab. 12 months ago where i've had more of the scalp papules (painful) over many months & after they mostly subsided, the ithiness & not extreme shedding but more than usual. IT's the pits!!!I know we need to carry on somehow but it sure is tough...... Liz Lov, thankyou for sharing your journey,you always inspire me to keep trying, giving hope that eventually the changes this condition forces on us will be something i will manage to adapt to.....sometimes, like lately I have really been struggling with the ongoing loss & relentless discomfort (sweating & heat aggravates it, summer here, very hot & humid).......Jules Aust

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