May 2017 Blog Posts (14)

My story

Hey so my name is Emily im 21 years old have had alopecia totalis since i was 6 started to lose my hair end of kindergarten and my hair dresser started to notice patches it took us months to work out what was going on then we got sent to a dermatologist where i found out i had alopecia we then for many years tried all sorts of treatments and they worked for a bit but always ended up losing it in the end we tried cyclosplorne dcp pednislone and more.

Then one horrible day my doctor said… Continue

Added by emily5 on May 30, 2017 at 5:20am — 2 Comments

Sad and feeling overwhelmed.....

Hi everyone! I'm new to the group here. After years of fighting with thinning hair and hair loss I finally gave in and bought a wig this week.  My mother has Alopecia and I knew at a young age there was a good chance it would happen to me but never expected it this quickly.  My youngest daughter died 13 years ago and that's when I noticed it getting worse. My Dr. confirmed it was Alopecia and that the stress I was under triggered it. I was amazed at how emotional I felt over losing my hair.…

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Added by Sadness on May 29, 2017 at 5:36pm — 7 Comments

eyebrows!

Hello everyone,

I wated to ask if anyone had an experience with their child loosing eyebrow hair too in alopecia?my son has had it since more than a year, will his hair come back,Anybody knows anything that works?

Added by huda86 on May 29, 2017 at 12:51pm — No Comments

Update on my alopecia

Hi everyone, I haven't written a blog for a while. I have now had my 5th dosage of DCP treatment to hopefully encourage an allergic reaction tricking my immune system and hopefully allowing my hair to return. I just wanted to know if anyone has had this treatment and if so was it successful ?

Added by Lucy on May 26, 2017 at 6:05pm — 2 Comments

**New**

I'm a 24 YO female and I've had AA for about a year and a half now. I've done the whole routine of shots, creams, different hairstyles, stress relieving activities etc and nothing has seemed to work. There's days I accept it and days that I hate it more than anything.



I think the hardest part is trying to talk to your family/friends about it and getting angry that they keep saying "It's just hair. Everyone around you loves you no matter what. They don't care that you're losing your… Continue

Added by Pmadventure on May 24, 2017 at 12:55pm — 8 Comments

Wigs or not

Since buzzing what was left of my hair I haven't had the desire to wear any wigs. It just doesn't feel like me. I have also lost my eyebrows and lashes. The loss of my eyelashes almost feels worse than loosing my scalp hair. However, with makeup I am coping.

Added by Anne Williams on May 24, 2017 at 12:49am — 1 Comment

Having a tantrum and feel like a 2 year old

Well, what can I say? I hang my head about my shameful, childish behaviour today. What a tantrum I had. Even threw my wig over the balcony into the garden 2 floors below. The reason? I have washed it 3 times in the last week trying to get it not to bunch up in the back. I don't know why it is doing this, it rarely happens. It is a remy hair wig and usually I don't have this problem. I am over it!

Since I lost (and found) my virgin Freedom hair wig I have felt so insecure about myself.…

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Added by Pat on May 21, 2017 at 3:55am — 12 Comments

*NEW*

Hi I am new to this group. I am looking to meet like minded people that can support me, I experienced hair loss, bald patches due to the use of treatments etc and launched the hair heals campaign. Really looking to get a group of people that understand me together and assist in raising awareness here in the UK.

Added by HairHealsClaire on May 19, 2017 at 5:23pm — 1 Comment

The Creation Of A Bald Princess - Ella The Enchanted Princess

Here is why and how Ella The Enchanted Princess was created. She was created because of what I learned when I was going through the challenges of Breast Cancer. I found out what was really important in life and it was definitely not my hair. After losing my hair to Breast Cancer, I realized that Bald Is Beautiful and that being bald doesn't change who you are! I didn't hide my baldness, because I knew I was the same person with or without hair.



It didn't make a difference to me if… Continue

Added by PrincessElla on May 12, 2017 at 2:37pm — No Comments

Polish Alopecians near Tarnow

After wondering about the four people with alopecia over several generations in my family tree, I have been missing the obvious option to trace this: AlopeciaWorld! If anyone can tell me the present and past (1800s and earlier) prevalence if AA, AT, and AU in Wierzchoslawice, Poland (particularly in the Bogusz families), please let me know! I am also about to do the Ancestry.com DNA test...but I hear there is a DNA test with another company that focuses on males. Out of those I know since… Continue

Added by Tallgirl on May 5, 2017 at 11:30am — 1 Comment

Covering Partial Hair Loss

Does anyone have a cosmetic solution for partial (50%) hair loss? I have been using Topik spray for my daughter with progressing AA and it's getting difficult to achieve a natural look. She is not quite ready for a wig. She is 9 years old and I am hoping someone here has dealt with this successfully and can give advice. Thanks

Added by jesse in NJ on May 5, 2017 at 11:30am — 7 Comments

Freedom Wig Repair question

Hi Everyone

I am new to this website and wondered if anyone can help.

I have been suffering with AT for the past 4 years and have been wearing freedom pieces. I sent one of my freedom pieces in over 6 months ago to be repaired and have been informed that mine is in the next batch to be repaired. I have also been told that owing to the extensive damage it may"die during the repair process"!

I only worn the freedom piece for 12 months and yes there was a bald spot…

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Added by Bonnie Piper on May 5, 2017 at 7:34am — 1 Comment

Treatments for AU

Has anyone heared aquatic acid treatment for AU?

Added by Suzi on May 1, 2017 at 5:14pm — No Comments

Round Two

Today I noticed that my Alopecia had returned. About two years ago was when I noticed it for the first time. 

Honestly- I wish it would have just all fallen out instead of growing back and falling out again. I have always been aware that there was a chance it would fall out again, but never admitted to myself that it was more than likely going to happen. 

I realized today that even though it is not life threatening, for which I am thankful, we all have a disease. We have a…

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Added by JuneB on May 1, 2017 at 3:34am — 3 Comments

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