Comment

Comment by Minter on March 7, 2018 at 9:04am

I like her video & the hairband piece looks great! I don't think it would work for me, but for some it might be the perfect thing :-) 

Comment by Jess on March 7, 2018 at 2:55am

I came across this video on YouTube and thought some of you might be interested. This women created a frontal hairpiece for those with FFA. It's like bangs attached to a hairband, and she is offering to make them for people for $25 plus free shipping. It may not work for everyone but could be a good fit some. Check it out. 

https://youtu.be/RbEIYMNQXy0

Comment by Halfbakedwho on March 6, 2018 at 3:05pm

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 though there’s less of everything else. 

I am making it a nice trip to Paris with son #3. We will stay at an AirBnB, and am adding on a seminar to make it a business expense trip. The guy (new doctor) looks like an intense self-promotey kind of guy. I don’t mind that if he can help. But I am not getting my hopes up - in fact I’m going because I feel like it would be irresponsible to not go, to not keep trying to find a way to slow this down. However I don’t think anything is working particularly well. And again, I don’t like it - I really, really don’t like it - but life at 52 is hard enough and there isn’t enough time left to rail against the unfairness of it all, and do all the cool things I still want to do. 

I will let you know what the man says of course. 

We all seem to have the same thing, but maybe not quite in the same way, it would seem. 

Comment by Jules Australia on March 5, 2018 at 10:47pm

For those ladies on the forum who,like me, believe they may have both FFA and diffuse LPP, I found this recent article www.karger.com/article/fulltext/479799 from Karger "Skin Appendage Disorders" 2018;4:105-107 "Clinical Description of Frontal Fibrosing Alopecia with Concomitant Lichen Planopilaris". It describes involvement of the non-scalp hair areas AND presence of other symptons (eg more pain,itchiness,facial papules, loss of eyelash& body hair, amongst other symptons),possibly being more frequent in these patients.

Comment by Jules Australia on March 5, 2018 at 10:16pm

Hi everyone I'm just sending this as a test as I have had trouble downloading my previous 'Comment/Discussion' to the forum hoping it will get thru...??

Comment by Pascal on March 3, 2018 at 4:08am

Viruses seem to trigger autoimmune diseases, HPV and Herpes virus are specifically indicated for (Oral) Lichen planus, so they are also (I presume) connected to our illness which is a subtype of Lichen Planus. I'm very interested to know whether someone of you knows how to cleanse the body effectively from viruses? Would boosting the immune system be an answer with autoimmune diseases (appart from gut healing)?

Comment by Pascal on March 3, 2018 at 3:52am

Thank you Ilustr8r for infos; I didn't know about B12, I use B complex + biotin, but a low dose, daily. I will try with bigger doses. I also get more itchy if I overdue with sugar/diary/gluten. Halfbakedwho thank you for your comment about your hair specialists, I will have to find good ones out of my country. Dee I understand what you mean; my rosacea was very serious for 8 years, then a year ago I didn't get so red in my face, and at that time my eyebrows started to fall off and I also developed Hashimoto. How is your thyroid? Now I think that rosacea and thyroid are correlated; the moment my thyroid started to fail and I developed Hashimoto, the redness was not so intense, sometimes I wasn't red at all. But it didn't disappear. My thyroid problems started in addition with the loss of eyebrows, and were followed (6 months period) by irregular menstrual cycles, so it must all be connected.

Comment by dee on March 3, 2018 at 2:55am

Pascal Hi. I am interesting that you have rosacea as well as FFA. I developed 18 months ago

My FFA is under control with very little loss and none for a year but the rosacea is now causing me as much misery. I don't go out in the evening as that is when it gets really bad. I look as if I was a hopeless alcoholic .

I am being treated with long term antibiotics but I can't see they really make much difference.

Comment by Halfbakedwho on March 2, 2018 at 3:50pm

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 and informative. BUT - since it's so hard to get an appointment, and since the woman I saw is only available on Thursdays (when I work in my other office) I am going to a private practice and I'll see how Dr. Bouhanna is. Apparently he does grafts, even with FFA patients. I don't need a graft, but maybe I will... though I think if it gets to that point I would rather just wear a hair piece. 

I have been really tired lately, but it's been a hard February. I have taken off time from dance and exercise to heal my stupid foot, and to just rest. 

I have so many oils that it's probably a bio-hazard. I am not itchy, but I oil my scalp and hair the night before I shampoo it. It's not pretty ; ) ... Castor, coconut, and red pepper oil. Add croutons and chopped greens, and it's perfect. 

Comment by Pascal on March 2, 2018 at 2:37pm

Halfbakedwho are you satisfied with your hair specialists in Paris?

• ‹ Previous
• 1
• …
• 96
• 97
• 98
• 99
• 100
• …
• 507
• Next ›
• Page