• Female
  • France, France
  • France

Halfbakedwho's Friends

  • Pascal
  • Afraid
  • Shy Raven
  • pauliegirl
  • Jess
  • illustr8r
  • Rachel Germany
  • Airam-FFA
  • Jacqui
  • Lo
  • Classical Anne in NC mountains
  • Liz Lov
  • diana
  • Liz

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Latest Activity

Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"So I met with Dr. Bouhanna (Dr. Famous Man) yesterday. He changed my treatment - no more Minoxidil! He says he’s not convinced it does anything. Neither was I!  But - stronger and different steroid to put on my scalp 2x day, and…"
Mar 9
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Hi everyone D-2 for my next specialist appointment. Pascal, you have more hair than me on the sides. No more sides for me. My hair on top is thinning, and my forehead is larger. I haven’t lost any eyebrow, knock wood, nor much of anything else…"
Mar 6
Halfbakedwho and Pascal are now friends
Mar 3
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"I was very happy with the Clinique Saubouraud, and would continue going there in spite of the difficulties getting an appointment and the wait (up to two hours) when you're there - because the doctor really took her time and was very thorough…"
Mar 2
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Hi Pascal, are you in France maybe? One of my sons is named Pascal. It seems that you have more than just LPP FFA. So far I'm just on the regular Clobéstasol and Minoxidil. I had been going to the Clinique Saubouraud in Paris, but their…"
Mar 2
Halfbakedwho joined Kathy in Denver's group

Frontal Fibrosing Sucess and Burnout Stories

A site dedicated to tracking success separate from a broadly focused site on FFA. When people are new to the diagnosis and searching for info, the success side of things is elusive while the dark side is at every turn. I think this is in part because with success, one moves on. I want to make a plea for people to leave their good stories --- timeline and treatment --- here as those of us who are early in the process need the hope and understanding that success and burnout do happen.
Feb 28
Halfbakedwho liked Kathy in Denver's group Frontal Fibrosing Sucess and Burnout Stories
Feb 28
Halfbakedwho and Afraid are now friends
Feb 28
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Afraid don't apologize. I have had spongy scalp too - it comes and goes on the top - and where I've lost my hair it's numb. Do you have access to a good specialist near you (or not too far) who understands FFA? I myself go to Paris (I…"
Feb 28
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Isn't a dermatologist covered by insurance??? I haven't lived in the States for 20 years, I hate to give you insurance-envy, but that's one worry I really don't miss.  Anonymous, I am losing hair at my nape too. It also…"
Feb 25
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Hi Rachel and everyone, I live in Nantes - not exactly on the border : (. I will be in Reims tomorrow for the ceremony for my BIL. A bit closer. If you come to Paris or get further west, let me know! We will be heading to Prague and Budapest next…"
Feb 22
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Unless your thoughts in your head have little bitty fire-fingers that you have purposefully caused to pinch and burn out your hair follicles from the inside out, I don't understand how you can blame yourself. If this is the case, then maybe you…"
Feb 20
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Wow, I love the pixie in theory, but am very scared of it as a hair-reality on *moi*. I am so used to having big old hair. Now it’s just old, and confused (big in some places, gone in others), like yours truly.  I love the way your color…"
Feb 20
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"Hi and thank you for the condolences. Tonight - up in the middle of the night - seems my hair is going faster these days.  Ws it a good idea to read the side effects of the Clobestasol - aïe as we say here- thinning skin, weird purple…"
Feb 19
Halfbakedwho replied to Anonymous's discussion Hair, skin, nails vitamins. in the group Frontal Fibrosing Alopecia
"Hi, I am replying to follow the discussion. When I was taking a lot of iron, my nails grew very well - my hair not so much. I recently ran out of my cortisone, and it seems to help slow things down a *drop* - b/c this week there seems to be more…"
Feb 18
Halfbakedwho commented on Celia UK's group Frontal Fibrosing Alopecia
"hi everyone I am in a headband today. I am starting to move towards more acceptance. At least today, at least right now. My hair loss seems to be accelerating, though I admit I have run out of the cortisone this week and haven't been using it,…"
Feb 18

Profile Information

Relationship Status:
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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