Halfbakedwho
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  • France, France
  • France
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Halfbakedwho's Friends

  • Shy Raven
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  • illustr8r
  • Rachel Germany
  • Airam-FFA
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  • Classical Anne in NC mountains
  • diana
  • Liz

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Latest Activity

Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"No real itchiness here either. The CARF site explains pretty well that there are different types of scarring alopecias. I am not sure I have the lichen planipolaris which seems to include itching and sores - but my dermatologist classified me as…"
Sunday
Halfbakedwho liked Dreambird's discussion My Yarn Wig. Seeking Feedback for Creating These for Alopecians!
Sunday
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Hello Agneta, and Rachel and mc, Yash and everyone. Thank you so much for all the information, honesty - all of it. I am a complainer. I own it, and I try to complain positively and productively, so it may possibly lead somewhere. I don’t…"
Friday
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"For those of you taking Plaquenil, what are the side effects? And Finasteride is normally prescribed for prostate cancer (!).  Do these seem to help at all? I am going to see my specialist in March, and when I saw her last at the end of…"
Thursday
Rachel Germany and Halfbakedwho are now friends
Jan 10
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"I second the thank you to you, Helen. I have been pretty preoccupied by my hairline these days. My GP just gave me something to « calm me down » which is normally not my thing but I accepted it. Every day is different - some days I…"
Jan 9
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"ah, sorry I didn't mean to offend. I may get to turbans myself... but for now can hide under what's left of my own hair. I tend to joke about EVERYthing, like a nervous tic. My apologies. "
Jan 7
Halfbakedwho replied to Liz L's discussion Counselling?! We are our own! in the group Frontal Fibrosing Alopecia
"this is an amazing, important thread. Thank you so much. I want to take the time to read everything here. I am a psychotherapist myself, but it doesn't take away from needing A LOT of support myself as I trudge through this. Again thank…"
Jan 7
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Or on weekends it looks amazing, but to go to work I have an electrocuted poodle on my head. I just got it cut and it's a drop too short which makes it stand up higher, and I can't attach it with a barrette. I hear you. "
Jan 7
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Lol velvet turban! I will check it out. Am sensitive these days b/c almost 52 years old and my neck is falling down too. So I am going to wear a turban, and a very high turtleneck, and just let my face peek out. Like a turtle, hence turtleneck.…"
Jan 5
Halfbakedwho and Airam-FFA are now friends
Jan 2
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Another thing my dermatologist mentioned is something called Thuya essential oil. I too have started using a bit of Castor oil based on your experience - but if I have too many things, I'm going to forget them (forgot this New Year's…"
Jan 1
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Yesterday I went for a second hair consultation. The first one was a couple of weeks ago, and the lady said she coudn’t do anything for me, and that my medicines were « bad » and that her natural oils would « get the bad out…"
Dec 29, 2017
Liz L replied to Halfbakedwho's discussion Feeling better in the group Frontal Fibrosing Alopecia
"Hi, I've JUST started to wear a wig and I feel so so much better about things. Also looking at the fund ladies have with their wigs, this lady is also great:Jill Lynn Beauty Therapy (you tube)https://www.youtube.com/watch?v=LQ7BqVOGvX0I just…"
Dec 28, 2017
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"I am so sorry I messed up your name, Anne Louise. I was in the car and fiddling with my phone, please excuse me. The sentiment remains the same - do what makes you feel best. My hair on the top of my head is eroding like the ice caps - gradually but…"
Dec 27, 2017
Halfbakedwho replied to lynetter's discussion Possible Burnout in the group Frontal Fibrosing Alopecia
"Yay!!! Congratulations!! Knocking on wood for you. Interesting about the sunscreen which some have mentioned- my skin is so fair and I’m already as wrinkled as I care to be, so I’m not there yet. But am unsure if I want to be more…"
Dec 27, 2017

Profile Information

Relationship Status:
Married
About Me:
51 years old, have Frontal fibrosing alopecia that started 2 years ago, apparently rare. Hair loss only on sides of head and a bit on top, but it's getting more noticeable and my dx frightened me - have other auto-immune issues as well.
Do you have alopecia?
Scarring alopecia
Are you age 18 or older?
Yes - I am 18 or older

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Comment Wall (6 comments)

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At 7:23am on June 26, 2017, Shy Raven said…
Hi, thank you :) I like your screen name as well ;) I'm in the USA. Diagnosed around 1 week ago. I'm 38. I'm really struggling with depression right now because of this. You're the first person to accept my friend request and send me a message. I really appreciate that.
At 8:53pm on June 25, 2017, diana said…

hi halfbakedwho... i just tried to email you but it was returned undeliverable.. not sure what the problem is.. unknown or illegal alias.  not great at computer issues..  what do you suggest?  maybe you are better at this than i am?

At 8:30am on June 25, 2017, diana said…

also one more thing.  do you have constipation?  if so this is what you have to take care of.  my food sensitivities cause if for me.  when i stay away from the "foods toavoid list" things move better.  when not, toxins stay in the body and cause issues.  try magnesium gel.  you don't take internally.  you rub on your skin.  our bodies don't absorb nutrients like they should with leaky gut so we need to take in other ways.  also check your b12 levels.  mine were low / about 279 (although dr. will say anything over 200 is fine, but naturopath advsied over 600 or higher is where we want to be. 

At 8:24am on June 25, 2017, diana said…

from what ive read eczema you may know already is from stress but starts with leaky gut.  heal your gut with food. and of course try to control the stress.  i cant remember the site that i found info regarding the eczema help but will let you know as soon as i can dig it up. Stress was my big thing.  it took a while but i dont let things bother me as much, even this hair loss(which still freaks me out sometimes after getting out the shower) but then I do my artistic thing....i not only have to paint my face with makeup i now extend to my head. oh well.  that's my life.  i am 59 and will be 60 the end of the year.  I live in Canada so I love winters since I can put a hood on.   I would love to email you separately instead of on the site?  if you like please send me your email and we can communicate that way.  

hope you have a good day today
At 8:44pm on June 23, 2017, diana said…

i started with the autoimmune paleo diet.  you have to avoid a lot of foods for a while then reintroduce one at a time.  please read up on it as i did this my 1st yr for a full year,  i lost a lot of weight too due to the foods avoided.  eat real food, no packaged preserved sh*t, organic as much as you can possibly afford.  i also went to naturopath that recommended i be tested for food sensitivities.  i had a long list... gluten,dairy, bananas, yeast and almonds was a big one for me.  along with a few others.    Cara do you have any other issues going on right now?  hoping not.

At 9:32am on June 23, 2017, diana said…

hi.... i have had this scaring alopecia for about 4 years now.   did not try any meds, foams etc. that dr. prescribed.  thought they would cause worse problems, which we know they do.... how many side effects do most of them have.   i did alot of reading for natural help.  read up about leaky gut syndrome which is the cause of most health issues.  hard for most people to understand but this does start with stress.  worth checking it out.  diet help immensely.  i have foods that i must stay away from and feel better.  i use to have the itchy scalp then the hair fall.  not much

anymore.  think of hives... why does anyone get hives? diabetes, insulin/sugar issues, peanut allergy's.... all food related.  the one thing we all do is eat but certain foods affect some of us differently.  my girlfriend gets pain in her leg and left side from gluten and certain other foods.  stays away from it and it's gone...figure that one out.  she also has pain in her ear alot with a loud whooshing noise that goes away if she stays away from those foods..  anyway i can keep going but most people don't believe it..  anyway all the best to you.

 
 
 

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