akb
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  • Chicago, IL
  • United States
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Rose replied to akb's discussion Some questions in the group Frontal Fibrosing Alopecia
"Hi I agree with you I’m about to turn 24 and I have had it for a couple years I always thought it would stop or no way nothing could happen but it’s gotton very bad and noticeable now. "
Sep 26
akb commented on Celia UK's group Frontal Fibrosing Alopecia
"Pascal, Elidel helped with mine! They were only starting to thin (and I had a bit of a hole in one of them), but I think the Elidel arrested the loss and filled in some missing parts. They're definitely not as big as they were before, but I am…"
Mar 26
Liz Lov replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"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"
Mar 7
sallylwess replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"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…"
Mar 7
Jules Australia replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"Annie May I think tat some of us have Diffuse LPP as well as FFA. Some of the articles on LPP describe scalp hairloss as most often multi-focal areas (that often eventually join up) OR more diffuse; also that the nape is often an area of involvement…"
Mar 5
Plf replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"Hi all, so far I have been spared the itchy scalp, it sounds absolutely horrid, painful and worst of all I imagine a constant reminder of the horrible condition.  Thanks again all for your info, advice and support, I have a pharmacist review re…"
Mar 3
AnnieMay replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"I am SO thankful to have you all here. This disease is so bizarre and awful that I don't know what I would do without you.  I don't understand the variations between us either. As you said most of us have the creeping forehead…"
Mar 2
Jules Australia replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"Hi Agneta, If I ever get the chance to travel to your part of the world, I'd come visit & give you a huge hug....and yes coolness of the scalp (& body temp)certainly seems to help calm the eerie discomfort & odd scalp sensations…"
Mar 2
Agneta replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"Good afternoon Liz, Pif and Jules, It really make me feel better after having read your jouney with this B....y disease. Knowing that there are women all over the world sharing this. It is a pity that we live so far from each other. I have contact…"
Mar 2
Jules Australia replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"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…"
Mar 1
Liz Lov replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"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…"
Feb 28
Agneta replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"Hi Pif, I am so grateful to have this site. Don´t know what to do without it. It´s a pity that we are so fare away from each other. Sweden is a small country and not so many have this condition. Now and then I have to get it all out of…"
Feb 28
Plf replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"fab, will order book, yes overall health is very important..and feeling strong and healthy is the way to go."
Feb 26
Plf replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"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…"
Feb 26
Agneta replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"Hi, Oh how I admire all you ladies, with the brave attitude. I was diagnosed two years ago and I am on Plaquenil, Finasteride and steriod injections. I am still able to cover the"roads" on my scalp but not for much longer. All this…"
Feb 26
Liz Lov replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"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…"
Feb 25

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http://alexiskb@gmail.com

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At 12:36am on March 8, 2017, Cheryl, Co-founder said…

Hi Alexis,  

I wanted to welcome you to Alopecia World. I can honestly say that we are a great community here and I hope you enjoy the time you spend with us and we look forward to your input. Be sure to check out "10 tips for getting the most out of Alopecia World” which include a few tips to get you started!

Cheryl, co-founder

 
 
 

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