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Comment by sallylwess on May 31, 2016 at 11:23pm

I will be at the conference.  I look forward to meeting all of you.

Comment by Wyobalance on May 31, 2016 at 11:21pm

Oh, darn.  I paid at the door in Chicago.  Maybe they have more attending this year?  I found the Chicago conference valuable.  Good that you are going early on in your diagnosis.  Being informed is helpful.  I'm going to be a NO tourist.  Leaving early tomorrow.  See you!!

Comment by SJC on May 31, 2016 at 11:10pm

You too!  I'm on the waiting list for the reception, not sure why they would limit it...I've wrangled my hubby with registration at 9:45 on Saturday and I'll be attending the discussions.  Quite a few interest me as I'm only a year into my diagnosis and still have much to learn.  See you there!  

Comment by Wyobalance on May 31, 2016 at 10:31pm

I'll be at the reception on Friday night, and  also am a meeter/greeter Saturday morning 7:15-8:15  Yawn...  I look forward to seeing you!

Comment by SJC on May 31, 2016 at 10:14pm

Yes, Wyobalance, I'll be attending.  

Comment by Wyobalance on May 31, 2016 at 10:09pm

JLC, I'll be at the Carf Conference.  Will you be there?

Comment by DeniseC on May 30, 2016 at 10:48am

hi Isabel

I was diagnosed with oral lichen planus many years ago (15 maybe?), after misdiagnoses of throat infections (nothing like) and shingles.

The symptoms were a HIGHLY sensitive mouth and throat - I got to the point where I couldn't use normal toothpaste or eat anything vaguely spicy or minty as it was truly agony. I remember going to a Thai restaurant and asking for no spice at all. I then ate something that was mildly spicy and had to go into the ladies and cry.

Alongside the sensitivity were little blister type things - not quite blisters as they didn't pop or anything. They would pop up, be very sore, then disappear.

And - this is where the name comes from - a white/sometimes reddy - sort of rash in my mouth. It looks like lichen.

I was diagnosed by a dermatologist consultant at our local hospital. He took one look at my mouth and immediately diagnosed. I was told there was no cure and that the way forward was to manage the symptoms and try to avoid further attacks once that one had gone.

It's an autoimmune issue - in my family we have several conditions that all link to autoimmune problems, so we presume there is a genetic basis.

Lichen planus is fundamentally a skin condition - so you can get it on the outside of your body, or vaginally, or - as I had - in my gut. That was the worst by far, but the oral lichen planus came a close second.

The OLP in my throat and mouth took a long time to completely go, but (thank goodness) has never reappeared. The lichen planus in my gut has reappeared several times - once so badly I was admitted into hospital as an emergency as I was in so much pain. But - touch wood - I have been okay for a while now. I know the lichen planus stays in my body; I just need to try to avoid it flaring up.

The key for me has been to try to manage stress (hmm!), take natural products to boost my immune system, and get advice and support from an integrated medical practitioner (Julian Kenyon at the Dove Clinic - highly recommended). There is SO much more known about lichen planus now than when I first got it.

I am 100% convinced that the FFA is linked to the OLP and nothing at all to do with sunscreen. Both are autoimmune issues, both are skin related, and both relate to inflammation. Intuitively, I know it too.

If your mum has FFA and you recognise my description of the throat/mouth issues, I would strongly recommend you get advice from a dermatological specialist.

Good luck!

Denise

Comment by SJC on May 28, 2016 at 1:43pm

Can anyone point me to where I can find the research paper/information pertaining to sunscreen use and FFA/CICAL?  I can't seem to find it on the CARF website.  Also, is anyone going to the CARF Doctor Patient Conference in NOLA next weekend?  Thanks.

Comment by Isabel on May 27, 2016 at 5:34pm

DeniseC, can you tell me what the symptons were for the lichen planus in your throat? And what kind of exams did you have to diagnose it? I ask because my mother has been having throat issues for a while, now, and noone has diagnosed it so far. I'm beginning to suspect this may be her issue.

In the meantime, have you had any treatment for it, and if so, did you get better?

Comment by Wyobalance on May 25, 2016 at 12:33pm

Have those that are in FFA remission (or hopefully resolved), had a biopsy initially for diagnosis, and another biopsy confirming remission/resolution?  

I've lived "clean" most of my life (or more so than the average person, mostly organic, avoided toxins when possible), and still got FFA  (have used sunscreen).   I am excited for the study in the UK looking at genetics.

I did a very short trial of doxy & actos meds about 5 years ago = side effects.  No meds since.  Have lasered for a year.  My loss is slow, but continues. 

The question do docs in the US and UK treat FFA the same.  I expect so.  Carf is an international organization, so the docs collaborate.  

Yep, this is a difficult journey for us all, but hooray for those that no longer have hair loss!  

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