June 2016 Blog Posts (16)

Frontal fibrosing alopecia

By way of biopsy, I was diagnosed with Frontal Fibrosing Alopecia in mid Feb. 2016. The timing of the study and my home location were such that I was able to volunteer for a clinical assessment on Feb. 25th at the National Institute of Health Dermatology Grand Rounds in Bethesda, MD. Anywhere from 50-75 doctors examined my scalp and provided their consolidated opinion and treatment. My dermatologist reported the findings to me and we began the following treatment: 1) C-Tacrolimus 0.1%…

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Added by Tress on June 28, 2016 at 7:00pm — 4 Comments

Am I dramatic?

My friends say that I tend to be a little dramatic. I have lost not as much hair as most people have here on this site that I have seen. I decided that I wanted to make sure I had some power. I lost most of my hair in the back in silver dollar size maybe bigger. The front of my head is thinning that for me its the the same like it was months ago before all this. Maybe it has always been thinning but it got worse with in the past 4 months. Anywho, the whole point of this rambling post is that…

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Added by Akrose on June 27, 2016 at 8:00pm — No Comments

Itchy scalp, with sore red bumps.

Does anyone else have problems with itchy scalp and random flair ups of very sore red bumps? I have Alopecia areata, and my scalp itches all the time. Its like i have lice or something, its very annoying. I also occaisionally get these swelled up red bumps around hair follicles, and they really hurt when i brush my hair. Please if anyone has any tips, please share!!!

Added by Tashalea on June 26, 2016 at 12:00pm — 2 Comments

Viviscal for alopecia universalis

Has anyone tried viviscal? I ve been using it for a week now and I see a few hairs coming back in my eyebrow area, I am going to use it for at least a year and see. I am au for over 20 years and still searching for a cure.

Added by Gina on June 22, 2016 at 3:48pm — 1 Comment

Today was the day I let it go

It all started in April with a small patch and thinning of hair, after that the doctor said its alopecia areata. I was losing hair, getting more patches and my head well that itches still. Everything seems to be normal as much as the doctor told me. I was suppose to do treatments but sadly certain things are not covered by my insurance and some of the medication has side effects that are affecting me. So I am doing this naturally. I made the decision mid May to let it run its course.…

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Added by Akrose on June 21, 2016 at 6:30pm — 1 Comment

Feeling emotional

I have universal Alopecia and it has all happened in under 6 months.  In the past month, I have lost my eyebrows and eyelashes and let me tell you that was almost harder than losing all my hair.  I go back to my specialist on Tuesday and I am trying to prepare myself for what I guess I already know.  I just wanted to share with everyone that each and every day is a gift - with or without hair and I am beginning to finally embrace that.  As hard as it is to look in the mirror some days I dig…

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Added by Maples79 on June 16, 2016 at 4:00pm — 8 Comments

Freedom Wigs

I'm new to this site and you can probably guess.

I just found the shop tab and the wigs I was blowing about it advertised here.  Who knew?  Not me.

Added by Pamela on June 11, 2016 at 8:52pm — No Comments

I am over the moon excited

I have been struggling with Alopicia since the very early 80's. My mid 30's. I am convinced that my situation in due entirely due to stress.  We moved from Il to MN in 1981. My husband had a job, that was the rule before we moved.  Well, I'm not sure if it was even 6 months after the move that the place closed the doors. Here we were with two kids, no job and no money.  Going from 1500 per month to 0.

My husband went to work for a farmer.  900 a month and free rent.  Kids on reduced…

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Added by Pamela on June 11, 2016 at 8:30pm — 5 Comments

What About Alopecia Babies?

My first bout with AA was in my 20's with AU following at age of 35.  A great paternal aunt was said to have had sporadic AA in adulthood.  2 of my 3 Children have AA since childhood but it's been managed.  My 3rd child has never had AA.  What I can say is that my children with AA have my support, don't feel alone and know that their father and I always understand and normalize it as much as possible.  My understanding is that although there is a genetic link, most people with AA don't have…

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Added by edie1122 on June 11, 2016 at 6:44am — No Comments

Vegan?

Has anyone here successfully changed there diet to regrow hair? I have been looking into claims of people going vegan/organic and have amazing results. I'm mostly a veg/fruit eater myself but I still included some animal products.

Added by Matt1 on June 10, 2016 at 8:00pm — 40 Comments

Tingling or crawling in the scalp

Hi guys, 

Does any of you face tingling or crawling in the scalp and body in alopecia? Does this happen?

Thanks

Added by Swati on June 10, 2016 at 12:30pm — 4 Comments

Struggling a lot lately

Hi. I'm new here and I need to vent.

I am a mom of 2 8 yo and almost 1 yo. Can't say I'm happily married at this point because I'm not happy with myself, my appearance and just life overall. I have had AU for almost 2 years now. My hair stared to fall out when I was pregnant really fast and then we moved states since we're a military family. Shaved what little patches I had left November 2014 while pregnant! Devastating to say the least.

Had to put all my feelings aside to…

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Added by Heatherdcr on June 10, 2016 at 12:30pm — 3 Comments

Center Yourself and Do Your Next Big Thing - Commencement Address May 22nd 2016

This is the Commencement Address I gave at my alma mater, Framingham State University on May 22nd, 2016. I've had Alopecia since I was 7 and I shared my childhood with Alopecia as well as my adventures in Silicon Valley as part of the early YouTube team.

Added by Michael Powers on June 8, 2016 at 2:40pm — 2 Comments

What's up with my hair?

I have had AU for about 2 years or so. I lost all my hair. My lashes came back then they fell out again! Then they came back! I have regrown all my hair back except for my scalp. I have hair on my neck (lt blonde hair) up to my scalp. I don't have even one hair on my scalp. My brows are growing back but look strange the way they are growing. They're light so I'm going to wait and see what happens there.

Has this happened to anyone else? I am not using any treatment and haven't for a…

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Added by Barbara on June 8, 2016 at 12:30pm — No Comments

Beware of the hype--science hype, that is

Over at TheGlobeAndMail.com, Timothy Caufield warns that "overly enthusiastic representations [of science] can mislead the public about the readiness of a technology for clinical application, thus generating unrealistic expectations. Hype can skew research funding and lead to misinformed policy debates. And it can have an impact on clinical decision-making. It may also facilitate the marketing of unproven therapies – a…

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Added by rj, Co-founder on June 7, 2016 at 11:30pm — No Comments

2016 My New Story

I have Alopecia Areata but at this time it is in remission but now because of other autoimmune diseases and Parkinson's and stress from a death of a very close friend my hair is falling out all over my head from the root. I can see the root ball and also pustules on scalp and what looks like grains of sand here and there. My hair is so thin now it is just wisps of long hair very thin also like those who have had chemo. I have tried antibiotics, antifungals, given to me by Derm but nothing is…

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Added by itzmejudy on June 7, 2016 at 2:05pm — No Comments

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