Beez
  • Female
  • Kennett Square, PA
  • United States
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Latest Activity

Beez replied to CurlyK's discussion CARF Conference 2018 Notes in the group Frontal Fibrosing Alopecia
"Excellent notes Curlyk! Thank you so much for sharing them. Glad to hear they are finally classifying this as autoimmune. So many here have felt it was.  My doc keeps telling me finasteride is not recommended even when I tell her I have read…"
Jun 13, 2018
Beez commented on Celia UK's group Frontal Fibrosing Alopecia
"As I see more 'inroads' along my hairline this week, I am so damn frustrated and angry. What is the point of all these doctor's appointments and conferences, these unproven theories (e.g. Sunscreen), untested treatments, very little…"
Jun 5, 2018
Beez commented on Celia UK's group Frontal Fibrosing Alopecia
"I live 45 minutes outside of Philadelphia and considered going but it’s $250!! Ridiculous"
May 15, 2018
Beez commented on Celia UK's group Frontal Fibrosing Alopecia
"Halfbaked... you always make me laugh and laugh. Thanks I need that!"
May 1, 2018
Beez commented on Celia UK's group Frontal Fibrosing Alopecia
"illustr8r.....this is good news and I'd like to try it too. Lots of positive stuff online about it. do you apply it just along the hairline in front? How much? Do you apply with fingers, q tip or an applicator? Do you rub it in?"
Apr 23, 2018
Beez commented on Celia UK's group Frontal Fibrosing Alopecia
"Yep, Plf is right....we all get lulled into thinking the FFA is cured or gone when we go into a remission type period. Even the doctors do; then all of a sudden it's back and we are obsessing in the mirror again.  As for the…"
Apr 13, 2018
Beez commented on Celia UK's group Frontal Fibrosing Alopecia
"Christi I used it for 8 months and had to stop because my scalp became inflamed and scaly. Didn’t notice any increase in hair shedding from November til late March. I don’t know if the increased hair shedding now is from not using…"
Apr 11, 2018
Beez commented on Celia UK's group Frontal Fibrosing Alopecia
"I started minoxidil to the crown  of my head last year and lo n behold, after about 4 months the handfuls of hair I lost every shampoo decreased, and also I saw some new growth and it was DARK hair, not gray! But..... it was very sparse,…"
Apr 8, 2018
Beez replied to BubbaLu's discussion New at FFA in the group Frontal Fibrosing Alopecia
"Hi BubbaL, So sorry to hear you've been given this rotten diagnosis. You at least got a fast answer....many of us bounced between docs for years before getting the right diagnosis. Most FFA sufferers have eyebrow loss, many have arm and leg…"
Apr 3, 2018
Beez replied to Jess's discussion More Tentative Evidence of a Cause: Sunscreen/Titanium in the group Frontal Fibrosing Alopecia
"Interesting but it's ONE person.  In my hand now I have a bottle of the sunscreen I had used for 25 years. It has no titanium or titanium products listed on the label.  and I rarely used it on my forehead (always wear hats).  At…"
Apr 3, 2018
Beez replied to DragonandFox's discussion FFA since 2014 diagnosis...Now, Scalp Psoriasis...any1 else? in the group Frontal Fibrosing Alopecia
"Yep! Last fall I started having terrible scaling and flaking, no matter what I tried. Went to dermatologist and ended up getting Kenalog injections (again) but this time all over the top of my head. Ouch. I used topical Clobetisol for about a week…"
Mar 27, 2018
Beez replied to Jess's discussion Low Estrogen and Tamoxifen as Risk Factors in the group Frontal Fibrosing Alopecia
"If the vast majority of women who have true FFA (by biopsy) are menapausal, then there is clearly a link. My doctor said "oh for sure they are connected, they just haven't found the connection yet." "
Mar 16, 2018
Beez replied to Anonymous's discussion Hair, skin, nails vitamins. in the group Frontal Fibrosing Alopecia
"I think that ‘light growth’ is actually dying hair. Does it look like baby hairs along the hairline??I had it and my stylist got all excited . It’s gone . "
Mar 16, 2018
Beez commented on Celia UK's group Frontal Fibrosing Alopecia
"I got the 'most women's hair and eyebrows thin as they get older' line' after about $7,000 worth of blood tests, $160 worth of various creams , 2 dermatologists and an endocrinologist. Well my mom had thick gorgeous brows til the…"
Feb 25, 2018
Beez replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"Hi akb! The problem with knowing what 'stage' we are in with this damn disease is that many of us had it for awhile before we either decided it was time to see a doctor or even more commonly (as in my case) went from doctor to doctor…"
Feb 23, 2018
Beez commented on Celia UK's group Frontal Fibrosing Alopecia
"Sadly, after months of feeling 'at peace'' with my slow hairline recession by closing  my eyes at the hairdresser, not obsessing in the mirror and making less and less trips to the dermatologist ( who hasn't prescribed…"
Feb 7, 2018

Profile Information

Relationship Status:
Married
About Me:
59 year old retired nurse. Noticed eyebrow loss in 2011 and thus began my journey to get an accurate diagnosis. After two dermatologists and an endocrinologist coming up wth nothing, I finally researched it myself and discovered FFA. Went to a new derm and on my first visit I told her what I had. She agreed, did the biopsy, and the rest is history. I have lost all of my left eyebrow, most of my right, about 1 1/2 inches from my hairline and oddly enough almost all body hair. I found this site awhile ago but honestly, it made me sad and I stopped lurking. Now I am back, balder but braver. Hello everyone!
Do you have alopecia?
Scarring alopecia
Are you age 18 or older?
Yes - I am 18 or older

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