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

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Latest Activity

Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Hmmm! Very interesting- I went for a consult yesterday at a hair place near where I live. She was very against medicine there, and has a lot of oil/organic treatments instead. She said that as long as I’m on the steroids I can’t do…"
7 hours ago
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"would you guys mind sending - maybe privately if you prefer - your headband sites, or wiglet sites? When I look at the headbands they are huge and not adapted to just hair loss in the front. Are they a pain to wear every day? I am projecting myself…"
Monday
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"well, thank you for your supportive honest responses... very strange. No actually it's not strange - I can practically directly correlate it to some stressful news I received last week. The news has been resolved, but I can't wrap myself…"
Monday
Halfbakedwho liked Celia UK's group Frontal Fibrosing Alopecia
Sunday
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"am having a recurrence - there are times when my hair falls out faster than others. I just went to the specialist in Paris 10 days ago, and she changed my treatment a bit. This has not prevented my hair from decided to come out more quickly RIGHT…"
Sunday
Halfbakedwho liked Donna's discussion Clobestatol
Dec 4
Airam-FFA replied to Halfbakedwho's discussion Update from me in the group Frontal Fibrosing Alopecia
"Hi Donna I have been using the Clobetasol shampoo and ointment for over a month. The hair thinning and loss continues but I will continue with this daily shampoo treatment until I see the Derm. again in Nov. I don't know if my hair would have…"
Oct 9
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Well to be honest, I just end up cheating, maybe a few times a week. When I am starving and on the road, there's nothing to eat without gluten and dairy. I try to avoid one or the other in that case (sandwich without cheese, or salad without…"
Oct 8
Donna replied to Halfbakedwho's discussion Update from me in the group Frontal Fibrosing Alopecia
"I was just diagnosed yesterday with FFA. The doctor prescribed me a topical clobetasol solution to be applied 2x/day for 2weeks then 1X a day. Now I’m worried since you say you are having more hair loss with the shampoo....."
Oct 7
Halfbakedwho replied to Minter's discussion Hormone Therapy/ Menopause in the group Frontal Fibrosing Alopecia
"I think it's a necessary defense to believe the best - that one is invincible. I feel fine except for the dry mouth and eyes. I work out, I try to eat well, and yet my hair continues to get patchy. I never knew one could have aneurisms from…"
Oct 7
Halfbakedwho replied to Halfbakedwho's discussion Update from me in the group Frontal Fibrosing Alopecia
"False positive is a good thing!!!! Not elderly here either (51). I am going to see an internal medicine specialist. The only other thing I have is aforementioned dry mouth/dry eyes. In November I'm going back to the hair specialist and probably…"
Oct 7
illustr8r replied to Halfbakedwho's discussion Update from me in the group Frontal Fibrosing Alopecia
"HBW- when I had my big flare and my hair was rapidly falling out my dr. ordered a ANA test which looks for AutoImmune antibodies and categorized then by disease-Lupus, rheumatoid arthritis etc... I had 3.2 score for Scleroderma. I went to a…"
Oct 6
Halfbakedwho replied to Halfbakedwho's discussion Update from me in the group Frontal Fibrosing Alopecia
"Letest is I have a doctor, whom I decided to NOT declare as my main doctor (which you must do in France) because he is so disagreeable but he is also terribly right in what he says. He just says everything yeling at you. "Your blood results…"
Oct 6
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"I have not been so good with my version of gluten-free dairy-free. Living in France makes the bread thing damn hard. For years and years I woke up to nice fresh bakery bread with my coffee. Now buying gluten-free stuff or eating gluten-free cereal.…"
Oct 6
Halfbakedwho replied to Minter's discussion Hormone Therapy/ Menopause in the group Frontal Fibrosing Alopecia
"Hi, I too have just started an estrogen/progesterone program. I always hated the pill and didn't want to do it, but I see a doctor who is very pro-natural and nutrition-based who told me my blood hormone levels were crazy-low. So crazy-low that…"
Oct 6
Minter replied to Halfbakedwho's discussion Update from me in the group Frontal Fibrosing Alopecia
"That is an interesting question that your friend asked- makes me think about how my life would be different if I had a full head of hair, I know I would be more confident for one thing, not always fussing with my hair, pulling it down over my ears…"
Sep 27

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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