Halfbakedwho
  • Female
  • France, France
  • France
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  • Jess
  • illustr8r
  • Rachel Germany
  • Airam-FFA
  • Lara79
  • Minter
  • CurlyK
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  • Classical Anne in NC mountains

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Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"wow one person a day with FFA - and the FB group has new people every day freshly diagnosed.  Today is one of those days I'm staring at my neck (which is actually now my under-chin-neck, as in it's becoming one entire piece unto…"
Apr 4
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"She is a caring friend. I took her up on that! Thank you so much CurlyK. "
Apr 3
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Hi again,  it seems that the hardest part for me is not knowing how I'll look in six months, a year, etc. I look at older women and know that I will probably have an additional challenge of a wig or whatever. I too have thick hair all over…"
Mar 25
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Toby btw I didnt want to take Finasteride which was also prescribed for me - just too scary as are the Jak inhibitors. I do appreciate the information though and the research being done gives me hope that at least some people are trying to do…"
Mar 23
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Hello, I haven’t postednin a while because my keyboard stopped working on my iPad, and this annoynace plus the continued progression of the hair loss and my funky, spongey, sort of painful scalp pushed me into a mute introverted space of ...…"
Mar 23
Minter and Halfbakedwho are now friends
Mar 1
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Hi everyone back to work and life here. I have come to realize I must have LLP - my eyebrows remain but I am getting other bald spots further back in my scalp. My mom is sending me on the NasalCrom (I think?) and there is a thread on FB on an…"
Feb 25
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Hi everyone, on my way home and stuck in the Atlanta airport, bad weather today. I was able to see CurlyK in Sarasota Florida! Thank you so much for driving to see me! We had a lovely lunch. Meet up if you can, kiddos, it’s worth it. I still…"
Feb 19
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Thank you my friends. It’s not easy hair, but it seems that unless you’re my sister (who got the good hair) then complaining about hair is just a sort of female rite of passage, whether you have it on your head or not..."
Feb 13
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"yeah well the side burn thing doesn't cut it really, it sort of looks like side locks, like I'm a religious freak. Am thinking of getting it straightened when I get home, and doing a headband for a bit..."
Feb 13
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"this is what I mean..."
Feb 13
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Hi Kandy Minter Claire Julia, illustr8r and everybody Kandy - please don’t let your hair keep you from your life. I’m 53 as of yesterday, and there’s still so much to do, as I imagine there is for you! Can you imagine a man saying…"
Feb 13
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"I am in the States right now. Is it true, Illust8r, that I should get nasal spray?  My mom has noticed the baldness - before she kept telling me over the phone that it couldn’t be as bad as I thought, etc. Now she tells me to pull my hair…"
Feb 11
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
Jan 27
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Yeah, I get the bad scary places too. These days I would like to be able to explore getting injections locally which seems less invasive to me than Finasteride, etc., but I don't live in Paris where they would do this for me.  I too envy…"
Jan 27
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Hi - yes there is a place downtown here where they are offering this light/laser therapy - I am wary about the cost though. Erika does this require you to actually go into his office for the treatments every day?  Did any of you see on the FB…"
Jan 26

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 (8 comments)

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At 3:53pm on August 12, 2018, Meme said…

Hi

I'm not good at technology but will try and send you a photo. I have lost about 3 inches from the forehead and round to my ears. I had my hair long and was wearing it up and hiding it with headbands. It just got to the point of being so fed up with the hair that was left. I don't regret the decision....yet...and I have to admit the wig is taking a while to get use to. I have a very small head and the wig lies in top of my ears where my glasses go so not the most comfortable after several hours. It is also very hot in the weather we have been having but in that case I just worn a baseball hat. I find it best not to make eye contact with people that way if they are staring I just don't notice. its a horrible thing to have but I would rather have this than an illness that meant I was in constant pain.  Take care

At 2:26pm on April 27, 2018, Classical Anne in NC mountains said…

Bonjour!  Just wanted to tell you how much I enjoy your witty posts.  And how I envy your life in La Belle France!

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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