www.alopeciaworld.com
Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies 0 Likes
Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue
Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies 0 Likes
Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue
Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies 4 Likes
Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue
Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply 0 Likes
Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue
Comment
Pam it looks great! I went on the internet and ordered a small real hair fringe with side bits. It was a cheap one from amazon £15.99, my daughter who is a hairdresser is going to colour it to match mine. I thought I would try it, although I don't need it now I want to be prepared! I'm also using it to experiment, if I need a larger one or could I adapt it my self etc. My daughter always wears clip in hair extentions so she is familiar with how they work etc. Once I get it sorted I will also put a photo up.
I didn't answer your questions. No you can't sleep in it. It clips onto your head and I would think that it wouldn't be good for your scalp to sleep with it. It takes two minutes to put it on. Remember the first few times you put contact lenses in? It took forever, and then you get to be a pro. I just give it a comb and mostly use my hands to smooth things around.
Oh, man! I can't believe I had the nerve to post that photo -- but I wanted you to see. It is a really good color match so when the wind blows you mostly see my bio hair. I think that if you looked at me closely you would know it is a piece because of the part -- it is just so small. My bio part is wider. Also the crown part is flat -- I don't have volume. Now, having said that you'd have to be staring at me to tell. For Open House when parents are staring at me I will put a head band on or something to break up the scalp line. Does that make sense? The gal where I purchased this has a website and she sells to people all over the country. She is a wig wearer herself and has many videos that are so instructional as part of her website. Her business is Patti's Pearls. If you do a google search you will find her.
I don't think it is hard to look good now -- the test will come after it has been washed a few times. The piece is human hair - Remy hair (whatever that means).
I know I don't need anything now, but I just don't know what a month or two from now will bring and I am hoping just to fade into the background. If I wait, wearing a piece will be so noticeable. I don't know why that bothers me. People have false teeth, fake eyebrows, fake boobs -- but fake hair is not cool.
Pam, it looks really good! It's very hard to tell where the real hair ends and the hairpiece starts- I mean, I can't tell. I don't think anyone would know. It has nice color and natural looking highlights. How long can you wear it? could you sleep in it? I might need to go that route sometime in the future, and I hope mine looks as nice as yours!
I had quite a few days - eyebrows and hair. I am uploading a photo. My family says they can't tell, but I guess the test will be when I am with friends and coworkers. Wish me luck.
good idea about the tattoos. there were several folks there that had them. the best ones by far were the ones that had some whisping or texturing in them. I know where I live there is an artist who does it. that said my derm has dissuaded me from having it done yet as he is giving me injections in my eyebrows every two months and there is a small study where people actually had hair regrowth in the eyebrows ONLY from the injections
CJ - thanks again. I am wondering if the people who attended and the people we are communicating with are the ones who are not responding to treatment. Perhaps if you were responding you wouldn't be on the internet or at conferences looking for answers because you already have them.
For me, I need to do whatever I can to save my hair. If I can't take the drugs or tolerate the "cure", I will have to wave my white flag and give in.
I think we have to do things to make us feel good. I don't want people noticing my hair loss so I am going to wear something -- even though I don't need it, but preparing myself for the inevitable. It doesn't make me feel good to begin my day trying to fill in eyebrows that are barely there, so I am getting tattoos. It doesn't make me feel good to try to fluff up a receding hair line, so I will clip in my bangs and get on with it.
And, if it doesn't make me feel good to take Doxy and Plaquenil twice a day, I will stop.
I am mad as hell that I have to get a disease that no one knows what causes it or how to fix it. I am so grateful that I found the seven of you!
I am wondering if the inflammation could be caused by a variety of reasons, for some it is metabolic (which is why Actos works) or if it is auto-immune which is why Cellcept works.
just a quick response to all the comments... celia- some people are also taking celcept ( sp?) and doxy is short for doxycycline - usually taken in combo with plaquenil. Most are also on some topical or combo of topicals, like clobetasol and protopic.
Karen - the docs there were starting to imply that FFA and cicatrical alopecias may not be auto-immune diseases as originally thought. I know that arthritis is inflammation and FFA is caused by inflammation - so inflammation may be the link. I think its worth you discussing all the pieces with your doctor though.
Chris - burn out here seemed to refer to the diseases just stopping - for some when they had lost 70% and for others when they had lost less than that. I don't know that there was anyone there who had minimal hair loss, had taken no meds and had it burn out with minimal hair hair loss:-( Dr barbosa was there and she seems right on the ball.. you are lucky to be seeing her.
Pam - no - I couldn't really see anyone who radiantly , confidently said they were winning the battle. darn. there were people who had come to a place of acceptance and they were OK with having the disease.. and many of those had found wigs or whatever to cover their bald spots. I too wonder the same thing - is it worth fighting something that will win in the end anyway, and put our bodies at risk for all kinds of other nonsense in the process.
I'm feeling really low these days, quite unsure of which direction to go. Plaquenil makes me nauseous and gives me diarhea - not sure I want to go to the next level. I di get my shingles vaccine yesterday just in case I do go on immuno-suppressants like celcept though. Sigh.
My thanks also to CJ. It's nice to know that people are aware of it and trying to figure out a cause and hopefully a cure. I think mine is related to my auto-immune system being out of whack. I've also had symptoms of arthritis - pain and swelling in my hands and feet, and an increased ANA count in bloodwork, which has been that way for a year now. I go to see a rheumatologist in a week and hope to find out more about that.
Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.
© 2024 Created by Alopecia World. Powered by
You need to be a member of Frontal Fibrosing Alopecia to add comments!