Comment

Comment by Simone NJ USA on July 20, 2013 at 6:43pm

AC: thank you so much for sharing your information..I was told by my Derm that Latisse can surely work for the eyebrow, but the thing is once you stop using though you will lose the hair and Latisee is extremely expensive which Insurance usually doesn't cover. I am also very interested in your hair clips...are you planning on marketing these clips? I would love to try one...

Comment by Kath UK on July 20, 2013 at 4:48pm

AC - thank you so much for all the information from your dermatologist that you've shared. I've lost 2.5 inches of hair and I'm taking Hydroxychloroquine (although I don't much like taking systemic drugs either) in the hope that I might be one of the 50%+ for whom this medication works.
I've started to wear hairpieces and I'd love to see the ones you've designed yourself.
Also the information about eyebrows - I didn't know there was a possibility they might re-grow with the use of Latisse.
Thanks again for all the info. You're a star.

Comment by AC from CA, USA on July 20, 2013 at 2:54pm

I just want to also note that Dr. Mirmirani and Dr. Harries are both doctors credited in published research articles on the CARF web site, so these doctors really seem involved and interested in cracking the cycle on scarring alopecia. It's extraordinary that we have members here who are getting direct treatment advice from both of these experts. In that sense, access to this forum is a blessing.

Comment by AC from CA, USA on July 20, 2013 at 2:45pm

Hello again!

Pam--I am from Sacramento and Dr. Mirmirani is in Vallejo (90 minutes away from me). You don't have to be a Kaiser member to be in her study, but you do have to go to her office for photos, biopsy, and exams at times. Up side-- you may get the benefit of new treatment experiments? I posted this before, but the study info is at http://www.permanente.net/homepage/kaiser/pages/c12551-48357.html

She and her partner (a molecular biologist) are heading up the study. The molecular biologist is digging into the mitochondrial research, so I wonder if this study could allow one the benefit of laser treatment therapy. Something to ask, for those interested. Since I wasn't actively inflamed as far as she could tell at the time of the visit, Dr. M didn't ask me into the study, but said she will do so if I go active again. Less than a week ago, my scalp was actively inflamed (go figure how that often happens with highly anticipated doctor visits).

I might be able to post a couple of photos of one of my three clip-in pieces to show how I put them together. The key is finding hair that matches your texture, finishing the clip with covering hair so neither the clip or wefts are visible at all, and then cutting the hair to your style so it looks natural (I angle mine). My hair was always fine and thin, so the extra hair on the clips also adds much-desired thickness for me. Honestly, if I'd figured this out even without having FFA, I would have used this idea just to add volume. I will be traveling to So Cal (Dana Point) tomorrow for beach time next week, with my clips in place. :) I return for home on Friday, but would be up for trying to arrange to meet tomorrow evening, or for a morning coffee on Tuesday (before 11 am) or anytime on Friday before I leave the area. With that, I could show them to you in person. I've actually thought about making them and selling them because they are quite useful for FFA sufferers or for those with thinner, fine hair.

To both Pam and Debs--your posts have helped me lots both for info and for the fellowship of what seems to be a similar voyage of discovery through the disease-- and this was one reason I wanted to memorialize and share with all what I got out of the visit.

Faith (in the whole of you are, no matter the hair), Courage (to face whatever comes next with the knowing that you CAN) and Peace (in accepting what is with minimum emotional turmoil) to all--AC

Comment by Debs on July 20, 2013 at 2:05pm

AC, a massive thank you from me too... this is fantastic information, it is very reassuring to know that derms both sides of the Atlantic are using the same drugs and that new research is being done. I also realise that what you said that even if I am losing some hair with the plaqeunil I would possibly be losing even more without it.
T have printed your notes out. I will definately get this supplement. XXXXXXX

Comment by PamW San Diego, CA, USA on July 20, 2013 at 1:57pm

AC, thank you, thank you, thank you. It was so generous of you to share what you have learned. I am very interested in the hair replacement you said you designed. is there any way that you can share more about this? Also, where in CA are you? Do you have to be a Kaiser patient to participate in the study? Thanks again.

Comment by Jules UK on July 20, 2013 at 9:11am

Thank you so much, AC. Your notes are really informative and very interesting. If you don't mind, I'd like to raise some of these points with Dr Harries next week, such as the laser treatment. Just off to buy some reversatrol!
Jules xx

Comment by AC from CA, USA on July 20, 2013 at 2:15am

Hello All,

Today, I finally saw Dr. Paridi Mirmirani, a dermatologist who is treating FFA patients and doing research on FFA. Helpful and informative! I tried to post my diary-style summary here, but it's too long. Instead, I am attaching a pdf file that is a full and lengthy summary of what I tried to post here.

Of course, I think it's an accurate representation of my visit and what we discussed, but I suppose it's possible I may have misinterpreted something. That's my disclaimer.

Best, AC

AC%20Consult%20Appt%20with%20Dr.%20Mirmirani.pdf

Comment by Pam on July 19, 2013 at 6:29pm

I am very interested in your new approach of consulting an immunologist, if such people exist! Any recommendations?

I have been seeing consultant dermotologists for roughly ten years, and quite frankly they haven`t been able to do anything for me.

I have tried more or less everything that other group members have tried, and am currently taking hydroxychloroquine twice a day, and using a steroid cream (synalar) on the front hairline when the hair folllicles get inflamed.

Am so depressed by it all, as my condition is now spoiling lots of things I enjoy, as I have become less able to hide it. Where should I turn for the best help on wigs and hairpieces? Can you get wigs which cover the hairline? I have lost about 2 inches, have got no eyebrows, and my hair looks thin! Advice welcome!!

Comment by Debs on July 19, 2013 at 4:13pm

Hi Linda, your detailed report of the treatment you have used is really useful, thank you so much for sharing. Xxx

Jules your idea of a timeline is great and might well reveal a cause and effect for FFA. Xxx

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