Halfbakedwho
  • Female
  • France, France
  • France
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  • Shy Raven
  • pauliegirl
  • illustr8r
  • Jacq
  • Lo
  • Classical Anne in NC mountains
  • diana

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Latest Activity

diana replied to Halfbakedwho's discussion Officially diagnosed now in the group Frontal Fibrosing Alopecia
"i am the same.  one day i feel "almost" normal, others i am also very paranoid and pissed off!  your description of that demon destroying our hair follicles is quite amusing and scary all at the same time.  I want to kill it…"
Aug 5
diana replied to Halfbakedwho's discussion Officially diagnosed now in the group Frontal Fibrosing Alopecia
"i'm with you.  most people just don't get it.  it's only hair loss... blah blah... the only way anyone gets it would be if it was happening to them.   all the best!"
Aug 5
diana replied to Halfbakedwho's discussion Officially diagnosed now in the group Frontal Fibrosing Alopecia
"a month of vacation.... that is fantastic and i'm sure will help with relaxation and remove some of that stress.  i am moving to France. lol..  I live in Canada close to Niagara Falls.  I do get 4 weeks holiday but take them…"
Aug 5
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Thanks Liz that's very interesting. I've been told my lacrymal ducts are "sclérosés" (scarified) and that it's a local not systemic problem, but that being said there's obviously a systemic issue when your…"
Aug 4
Halfbakedwho replied to Halfbakedwho's discussion Officially diagnosed now in the group Frontal Fibrosing Alopecia
"Thanks to both of you! No I'm not itchy, and like I said, I could just be paranoid. I'm on vacation (in France vacation is a long, drawn-out thing lasting a month) and trying to relax and think less about it. I am a lot less perfect on my…"
Aug 4
Minter replied to Halfbakedwho's discussion Officially diagnosed now in the group Frontal Fibrosing Alopecia
"What happened to my post!? I just saw that only the first letter appeared- grrrr. Anyway, I had written a reply to you Halfbakedwho- saying Vent Away! I have done more then my share and it helps a lot, as trying to explain what we are going through…"
Aug 3
diana replied to Halfbakedwho's discussion Officially diagnosed now in the group Frontal Fibrosing Alopecia
"sorry to hear that you have now noticed new missing areas.  do you still have the itchy scalp as that is a sign that it is still active.  i've had mine for about 4 years now and it's like a slow death..  it did slow down…"
Aug 3
Halfbakedwho liked Georgie's group Gluten Free Alopecians
Aug 2
Minter replied to Halfbakedwho's discussion Officially diagnosed now in the group Frontal Fibrosing Alopecia
"V"
Aug 1
Halfbakedwho replied to Halfbakedwho's discussion Officially diagnosed now in the group Frontal Fibrosing Alopecia
"Ok ten days later, and I think (am I paranoid) that I see new holes in my hair - above my right ear, and on the top of my head. What's crazy is how my mood can go up and down with this. Sometimes I have a decent equanimity and it doesn't…"
Aug 1
Halfbakedwho liked Crowned Regal's group Cicatricial (scarring) Alopecia
Jul 30
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"My eyes are dry and sometimes I'm terribly thirsty. This has gotten better in the past few weeks, possibly because I changed my diet (see discussion). I also used to be a terrible Coke Zero/diet coke addict, and was drinking a lot of that crap…"
Jul 30
Halfbakedwho replied to illustr8r's discussion AIP Diet: Did you try it? On it now? in the group Frontal Fibrosing Alopecia
"Hi, here in France the diet suggested is a bit different, so I'm on that (no gluten, no mild products, and cooking things at a low temp or eating things raw). So for me, no ground meat (high temp cooking) - what I am eating resembles a bit more…"
Jul 30
Jacq and Halfbakedwho are now friends
Jul 30
Halfbakedwho replied to Halfbakedwho's discussion Officially diagnosed now in the group Frontal Fibrosing Alopecia
"Wow, I don't know - but I do know that I started to notice my hair loss two years ago, and it was about that time that I started getting Brazilian straightening - once every 3 to 6 months. At about age 45 my curl just "died" on me -…"
Jul 22
Halfbakedwho replied to Halfbakedwho's discussion Officially diagnosed now in the group Frontal Fibrosing Alopecia
"Thank you! I feel like I'm in good hands in this specialized hospital unit for skin and hair conditions. She knew what it was immediately, and like I said, didn't overreact with a lot of meds. My curl is very (very) damaged from years of…"
Jul 22

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

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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