"Susan,
I remember when I got the diagnosis about 3 years ago and was devastated. I had no idea this was a “thing”. I searched on line for answers and the pictures I saw freaked me out!
I have been on Plaqinil since the…"
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BubbaLu
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- Kansas City, MO
- United States
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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.
"Hello everyone, I suppose when I got a new phone I quit getting email notices from this group, it’s good to be back.
I am the one who had fillers -Jeviderm - and the autoimmune attacked the fillers on and off for months, until the…"
"My hair has never stabilized, it itches, but the hairline is not yet too far gone. I attribute some of the control of my hairline to hydrochloriquine. Three weeks ago I went to the pharmacy and I was told they were “out”.…"
"I have been on the Ketosis diet since last January and was really strict with it. I took magnesium for muscle cramps that are a side effect of the diet. Recently I am eating low carb but not strict Keto. So, I stopped taking the…"
Profile Information
- Relationship Status:
- Married
- About Me:
- I am post menapausal for 2 years and was just diagnosed with frontal fibrosing alopecia and I'm hoping to see if there is hope for a cure or remission
- Do you have alopecia?
- Other type of alopecia
- Are you age 18 or older?
- Yes - I am 18 or older
Comment Wall (1 comment)
- At 9:52am on April 26, 2018,
ATB said…
BubbaLu, it took about 3 years. My eyebrows, then the front, and then the sides. My hair is very curly, so I would push it forward and anchor it with headbands, prolonging my denial. When I cut my hair from shoulder length to about one inch, I saw how much was really gone. That's when I saw a dermatologist and received a medical diagnosis that confirmed my hunch. It was actually a relief to learn that I am otherwise healthy, didn't do anything to cause my alopecia, and I don't need medication or a lifestyle change.
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