Comment

Comment by Minter on January 14, 2018 at 7:53am

I don't really have, actually never had any irritation or itchiness on my scalp/hairline- I have also lost about an inch all around and definite thinning on the top and somewhat thinning through the the rest of my hair.  

My brows are very thin and sparse and have also lost most of the hair on arms/legs.  I got my brows done last fall, it was The Best Thing I've Done, I love them! 

Back to the the itching, my itchiness and (what feels like little swollen bumps) happens on my forearms/wrists where it is definitely a creepy crawly thing, like something is burrowing into my skin that makes it itch so bad at times to the point where I actually draw blood.  

I worry about my nieces, as I apparently have "inherited" this from my mother and it would be awful for them to go through this too. 

Comment by Rachel Germany on January 14, 2018 at 4:03am

Hi Donna, I have been wondering about the itching and sensations too.  Sometimes it feels sore or tender around my hairline.  Flaking is present but not extensively and not permanently. As for sensations, well maybe sometimes but I haven't really taken much notice of it so it can't be too bad for me/at the moment ( who knows).  I started losing my brows approx. 5 years ago and have probanly lost an inch all around, less near the ears I think.  I haven't been to the dermatologist, I diagnosed myself in Nov. 2016 after having lost my brows completely,  hair on extremities and having reoccurring 'rashes at my hairline.  

Comment by Donna on January 14, 2018 at 1:13am

I see so many comments of people that have itchy, crawling sensations on their scalp. I’ve had none of that.   Is that a common symptom? Will I get that at some point? I was diagnosed in October. I don’t k ow how long it’s been going on. Probably a year before that I started noticing. My hair is receded behind my ears now. So I have grown out my bangs & that can cover that up pretty good for now.

Comment by ammie on January 13, 2018 at 8:06pm

Afraid, I never had a lot of irritation on my scalp only some flaking and that creepy crawly sensation. I feel like that cleared up in about six months of starting the Plaquenil. 

Also, thank you, AnnieMay for your beautiful post and while I'm giving shout outs, thanks to you all you for your sharing vulnerability and your strength. None us want to be here but it is nice to know we are supported and not struggling alone. 

Comment by Yash on January 13, 2018 at 4:55am

Agneta. It is hard. I found myself staring at other women's hair at the shops, gym, anywhere and thought consistently, why me? I used to be a hair model and I think now, did I do this to myself with colors, perms. In the past two yrs I even got two perms and the hairdresser never said anything and I think, did the recent perms make it worse. 

I have a young daughter, 4 yrs old and a few months ago I decided to get my missing eyebrows tattooed. She innocently told everyone, 'my mum got new eyebrows. Look at my mummy's eyebrows'. I was embarrassed but I got really nice compliments, including my husband, about them and it gave me back some confidence again. 

I feel like crap mainly when I know I'm going to be around other people. I hate going to work as I work with feral women who have alienated me from their group and make fun of people who have lost their hair or people who are fat or even maid fun of ethnic people. I sit quietly, do my job and pray that the hours will fly by quickly. I just think - karma will get them one day. When I am home, I don't feel as sad or depressed. I avoid the mirror and do things that makes me happy- play with my daughter, sew, do crafty things and bake.

Comment by Helen M on January 13, 2018 at 1:56am

Dear Agneta. I hope you find happiness and calm in the little things in life. A sunny day, a beautiful flower, a cute animal, stunning scenery, wearing a favourite item of clothing, a great cup of coffee, the love of people who matter to you. While each of us is responsible for how we feel and have to make our own decisions about what we do, I ask that you keep with this group - you don't have to post anything, just read the comments. Here you can be honest without fear of judgement. We are a global group who support each other through the good and bad. Kia kaha (stay strong). 

Comment by AnnieMay on January 12, 2018 at 11:18pm

Hi all-  Hi Agneta- I'm right there with you in so many ways. I so wish I was as brave as so many of the ladies here but I'm not. I have good days and very bad days. Yesterday I went for a walk without my hat and it started raining. When I got back in my car I looked at myself in the mirror and burst into tears. Just beyond devastating to see the changes in me from my receding hairline, the crazy texture of the hair I do have coming in, and my skin. . .oh my mottled creepy skin. . .I am 60 but I feel like I look like I'm 100 years old.

I have finally come to understand that I don't care when my family or friends say "it's only your hair?" It has been a process but I have realized that it's ok to be depressed about this, it's ok to be SO SOOOOO mad about this, it's ok to say why did this happen to me?, it's ok to have anxiety and panic about what the future holds. I lay awake thinking about my beautiful girls getting married someday and how I will handle that if I am at the point where I need to wear a wig?? I am a jeans and t-shirt girl and it makes me sick to my stomach just thinking about it. My sweet mother would tell me "Don't borrow trouble" but I have no idea how I could ever get through a moment like that, and so public when I'm a very private person to begin with.  

My girls were home for Christmas and I woke up so early every morning working to shower, dry and style my hair to keep my "secret" from them before they got up (they know and are supportive but "knowing" and really seeing my "alien" head are very different). 

BUT somehow I need to find a way to carry on with my life, we all do! This is it. We are on this planet for a very short time.  I have always struggled with anxiety/panic and I read the best thing the other day. Those of us with anxiety think about the past and worry about the future every minute but really what we need to focus on is today, just today, the next 16 hours and that's all. We all come from all over the world and different backgrounds and there is so much strength in that. I hate it but this devastating condition binds us together. in such a huge way. I am so thankful for that. Thank you, thank you to everyone here who shares their stories as we all try to navigate our way through uncharted territories. Such a lonely thing to deal with but knowing that we are all there for each other gives me strength everyday.

Comment by Jules Australia on January 12, 2018 at 10:16pm

Aagneta, I too am sorry you are having such a hard time with this crappy condition. It really isn't helpful when people make the comment "well at least you don't have cancer"....perhaps they're well meaning but it's so easy to say for those who haven't had the experience we've all shared.They have absolutely no idea how they would react to living with this if they woke up with it tomorrow....they just think they do!! I have read a few posts from different women over the past few years who developed FFA who said they had previously had cancer & dealing with the emotional challenges of ffa was much worse. Read "Sad in Chicago's" comment (in this group) on 20 Sept 2017 who said amongst other things......"its just a shity shitty situation, and yes I am a cancer survivor (24yrs... yea!)...but the joy of being healthy is diminished by this which came from nowhere & has no cure. I'm trying, but..." . Please hang in there Agneta, we are all here to listen to each other & can help each other get through this; I have had a bad year also (last 10 months), after 2 years of much milder symptons than the first couple years with return those awful scalp sensations/discomfort & loss from front & all around ears. We all understand the daily dilema & frustration....please keep talking to the group & let off steam whenever you feel the need..

Comment by Minter on January 12, 2018 at 7:15pm

Agenta, I too am sorry that you are having such a time dealing with this stupid disease.  There will be good days and bad days- but sometimes the bad days can really be overwhelming. The bad days can be made even worse when someone trying to help says it is only hair- which is easy for others to say when it is not their own hair- I know people mean well by saying that or even not saying anything and maybe thinking its better to ignore our hair loss, but it will always be there for us whether we are using "second hair" or not (love that phrase Rachel Germany)! Anyway, when it comes right down to it, is our own head, our own hair, our own feelings and there is no right or wrong way to grieve or accept the loss of our hair for any of us. 

We are here for you Agenta and for each other, I've said it before and continue to say it, I'd be lost without this group- thank you all!

Comment by Liz on January 12, 2018 at 5:39pm

Hi Airam-FFA. Yes it is the Genome project that they are doing at Guys hospital. Hopefully we will have some news later this year. We will if they have managed to map/profile the gene responsible for this condition. I'm not sure exactly what it all entails but the doc I sa at Guys last year seemed very hopeful that there would be news relating to FFA :)

Liz

xx

• ‹ Previous
• 1
• …
• 113
• 114
• 115
• 116
• 117
• …
• 507
• Next ›
• Page