Replies to This Discussion

Permalink Reply by Minter on March 23, 2017 at 6:45pm

I actually stopped using anything except tea tree oil about 2 months ago- I couldn't tolerate the medications at all- after I stopped the medications, I was just getting steroid shots along my hairline and eyebrows every month at the dermatologist and using clobetasol 2x's per week.  But then I decided to stop that as I wasn't thrilled with getting steroid injections into my head, if I knew they would definitely work, I might have thought differently.  But since no one really knows what stops this or slows it down, I decided that the best thing for me would be to stop all medications/injections and just take care of myself by eating healthy, working out and taking vitamins/supplements.  My hairline is still gradually going back, but, this is my opinion, it would have still kept thinning regardless of the medications so I would rather not have all of that stuff going in my body. So that is what I am doing, I am sorry I can't give you any answers as to what would help or not help :-(

Permalink Reply by LVL on March 25, 2017 at 1:15am

That's ok. I appreciate your feedback and understand not wanting to take medication and injections if they don't know for sure it works. By the sounds of things there isn't anything proving to work and doctors are just grasping at straws. It's so stressful and the more I stress about it the worse it gets but I can't help it. :( Thanks Lori

Permalink Reply by LVL on March 31, 2017 at 12:22am

Oh Agneta, I'm sorry you feel like that. I can understand, but trust me your loved ones love to see you no matter what I'm sure. I am with you though. It is very hard as a woman to lose your hair. I hope what you're trying helps you. If you're feeling down and would like to talk, please reach out to me or the group for support. Thank you for letting me know what you're using.

Permalink Reply by Minter on March 31, 2017 at 9:43am

Yes Agneta, we are here for you!  It is frustrating to sometimes not get support from friends or family when they say, oh it's not so bad, oh it's not so noticeable trying to be polite or whatever- then you start to feel like you shouldn't be angry and sad that this is happening, maybe it isn't that bad- but then you look in a mirror or see a photo and you realize you do have the right to be angry and sad as this is a real thing that is happening and it just plain sucks and there is nothing wrong with you going to get help to speak to someone about this either!

Permalink Reply by Minter on April 1, 2017 at 8:40am

Agneta, in no way should you feel ashamed of being sad about your hair-there is nothing wrong with being sad, angry, embarrassed, depressed or frustrated because of this! I also get angry because I have to either be forced to have to just accept that I will look like this for the rest of my life, with receding/thinning hair or have to spend a whole lot of money that I never had planned to spend on Hair?! seriously, having to spend this money on a hair replacement system instead of say a new kitchen or a great trip or a new car, but instead I have to spend it on hair because of this stupid random immune disease that has happened to us through no fault of our own, not because of something we ate, or did or we used sunblock and it has no cure.  So yes, be angry and don't be ashamed and it will hurt when you see women with great hair, and we don't have it unless we decide to pay a lot of hard earned cash for it, thanks FFA. 

Permalink Reply by Helen M on April 2, 2017 at 6:32am

Hi Agneta. I hope you have had a lovely day with your grandchild. Let's face it, having FFA sucks!! Today four teenage boys were laughing at me in the supermarket and one tried to take a photo on their cell phone. I didn't say anything to them but stared directly at each one with a look of 'I dare you' - they looked at the ground and walked away. I know kids will be kids but it still hurt. Anyway, I held my head up and carried on. We are still talented, intelligent, loving people - FFA doesn't change that. There is no reason why this should have happened to each of us - it just has. I too have good friends who are cancer survivors and I also at times think how can I be worried about hair loss compared to their journeys. But we are allowed to. Our hair is important and while it is wrong, the world judges women differently to men with hair loss. We have every right to grieve and be angry, but hopefully we can also find strength to enjoy life. I truely hope you can smile everyday and know that you are a good person.

Permalink Reply by Helen M on April 2, 2017 at 6:05am

I tried a prescription steroid creme and liquid drops for 4 months and it did nothing but cost lots. With the specialist advice of a senior dermatologist I came to the conclusion that there was nothing to be done. There is no magic cure for FFA. I met a lovely young woman recently who lost her hair at 13 years old and is now 27. She said that twice over the years some of her hair started to grow back but it didn't last for more than a few weeks then fell out again. She was such a positive, relaxed and stress free person that I thought well if she can't grow her hair there is no hope for me. I do understand it is a very personal journey and no one can be blamed for seeking a medical cure. Maybe one day something will be discovered, but I really don't think that is anytime soon and I'm not wasting any more money on lotions and potions.

Permalink Reply by Minter on April 3, 2017 at 8:02am

It is beyond words how great it is to have this place to come to!

I was just thinking back to when I first joined last summer and I was upbeat and thinking ehhh, this is doable, it is just hair, I can handle this-  to now when I am angry, just angry about FFA.  I think it is almost like the stages of mourning for a loss and I am in the anger stage now, as it is a loss- a loss for the way I used to look, feel, be, now I see a different person in the mirror and I am sad.  

HelenM, kids can be nasty and I am glad you stood your ground and they slunk away!! and I agree with you about not trying to "cure" this, it isn't going to happen anytime soon and I was/am tired of putting not great for me stuff in & on my body. 

Agneta, I am happy for you, you sound more upbeat and I hope you have a good day with your grandchild who loves you- hair or no hair, you deserve it!