Hi everyone! CARF has posted their conference schedule! So excited! Who else is going? I'd love to meet you there!

http://www.carfintl.org/wp-content/uploads/2020/02/Conf-Program-as-...

If anyone lives in central Florida, we've started a CARF Connects support group. Our next meeting is on March 21. PM me if you want details.

Hi Everyone

I would really like some advice please as I have been given leaflets at the hospital and have to decide which if any drug to try.  I have been unable to get Dutasteride but

instead it has been suggested I try Methotrexate or Azathioprine.  Has anyone had any success with these?  They look a bit scary!

I would really appreciate some guidance as I feel people here have a huge knowledge base.

Thanks so much for reading

Hola all, still following the thread hoping for a miricle..I applaud how you all manage to support each other and often inject some well needed humour into your posts... seriously one has to..I was just wondering if anyone's specialist had suggested tumeric supplementation?  Tumeric is an anti inflammatory and I  have read it has been used for oral lichen planus..sorry don't know how to spell, which I believe is related to ffa...or offer is also present with FFA.?  Many thanks in advance..hang in there all.. hopefully a break through soon, salute h

New hair and a fresh cut! This is a bonded human hair piece. It sticks to my scalp with tape and some ghost bond (glue) in the front. 

Curly K that is fabulous.  May I ask if you take it off daily?can you wear your hair back or tuck it behind your ears?  Is it hot?  Can you swim?  Where did you have it made? So excited for you!

I love the way you change up your style every 6 months.... so I suspect your replace your unit every 6 months or so?  Since you tape the crown, might I be bold enough to ask if you shave the top of your head or if your FFA has gone back that far?  I have quite a bit of hair (other than my forehead) and I have gone with clips so I can remove the unit ever night.  I use tape on the front and tried ghost bond only once and had a horrible time getting out of the lace front.  Do you use tape on the unit and the ghost bond on your forehead?  Buying my human hair unit is the best thing I ever did for myself - it gave me back my self esteem.  With my choice of clips instead of bonding, I am restricted to not being able to swim with it, but that’s okay.  I know you live in Florida - how does the ghost bond hold up in the humidity?  Thanks CurlyK - you look FABULOUS !!!!!  

Ugh! I had 2 weeks to go till I got my brows microbladed again but I had to push the appointment back another month and a half because of travel and her availability. I just hate drawing these suckers on daily. I’ve waited too long for a refresh. The scarring in my brows are pretty rough and eyebrow pencil and powder just doesn’t want to stick. I’m just venting but FFS is FFA a frustratingly thing to deal with!!!

I'll be  at the CARF conference in Nashville.  Can't wait!  It would be good to meet everyone.  Lots of medical info from the best in the field, plus tips & tricks for dealing with this stupid disease. 

https://interland3.donorperfect.net/weblink/weblink.aspx?name=E3430...

hello,

i am new to this group and i am so happy that i found it, i have a lot of question and is wondering if anybody can help me out. my hair loss started at the age of 22after a huge weight loss. i have seen about 5 to 6 dermatologist because i just don't agree with what they are saying, i have had 3 biopsy and they all came out to be androgenic alopecia but i don't agree with it at all. my hair line is receeding as well as my side burns and the nape of my neck , there hasn't been a stop to my hair loss. my hair falls out everyday on top of my eyebrows thinning out, all this hair loss comes with burning sensations including the eyebrows. Everyone just thinks im crazy which drives me insane. i am now 26 years old and i feel like they dont think it is ffa because of the age. does anybody know anyone this young with ffa ? by my symptoms can anyone tell me if this sounds like ffa ? can a biopsy be wrong?

CARF conference has been postponed until November. However, tonight at 6pm eastern time US, Dr Maryanne Senna will do a Facebook live talk on scarring alopecia and COVID-19. Find CARF (Cicatricial Alopecia Research Foundation) on Facebook to watch. It will also be recorded. Who else will be watching with me?

My apologies - the webinar is TOMORROW night, Thursday, March 19. 

Hello all, I wanted to check in and say that I'm thinking about everyone during these very unsettling times and hope that you and your families are well. With our kids coming home from NY and the stress of all this I've definitely had more hair loss and thinning and it's a challenge but nothing like what so many are dealing with. Thinking about everyone tonight

Hello to AnnieMay & everybody!  It is crazy times for sure now and I hope you and your loved ones are staying safe and healthy.  I was just thinking the other day of what will happen with the salons closed, to people like us and our 'problem hair' I know it is not really a priority in the great scheme of things at the moment-  but now that so many have closed down in the USA and other countries what can be done for those that have bonded hair or intralace systems etc... they need to be maintained or it can become pretty uncomfortable pretty fast and it is not really something that can be taken care of at home by yourself.  Anyway, again, Stay safe! Stay Healthy!  

I guess I’m stressed. I have 3 red pimples in my hair line. Just when I thought my hair had stabilized. This makes me very upset. I guess if I’m in lockdown no one can see me go bald!

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”.  COVID19 patients are using it to fight the virus.    Maybe that is more important than my hair, but it doesn’t make me very happy!  Has anyone else run into this?

Hi friends! Sharing a free CARF webinar with you that will be on Facebook live and on YouTube tomorrow (Tuesday) night with Dr. Maryanne Senna on the Mind & Body Connection with Scarring Alopecia. If you've been anxious or stressed with all that is going on in the world right now, tune in to this great resource with me! 

https://youtu.be/otBteQzX_4Y

CARF is holding a VIRTUAL half-day conference for all those with scarring alopecia. The date is Saturday, July 18 from 11am-3:30 eastern time in the US. There is a fee of $99 to attend (early bird fee good through June 30) but this supports the technology cost to put the conference on (CARF is a non-profit dedicated to supporting all of us with scarring alopecia). You can find more information and register on their website: http://www.carfintl.org/virtual-conference/

How many of you attended the Hair Necessities virtual CARF conference on Saturday?  What were your impressions of the conference?

How many of you have psoriasis?   About a month ago I started getting bumps on my arms that look like insect bites.  My primary care physician suspects it is psoriasis and has sent out a sample for testing.  I have a scheduled appointment with my dermatologist next month.  Does psoriasis go along FFA which is an autoimmune condition?

Hi Elizabeth, I'm sorry you're dealing with this. I don't have psoriasis but I have so many crazy skin issues from FFA it's depressing. This insidious condition is so much more than hairloss. 

Hi Annie,  I am not sure if it is psoriasis. This is what my primary care doctor thought it might be.  She prescribed Methylprednisolone that I took last week and she told to call her back if it did not improve.  She was going to do a biopsy.  I had what looked like mosquito bites on my left arm. they itch.  I have an appointment with my dermatologist later this month.  I still need to get back to her and see if I need to try to get an earlier appointment with the dermatologist.

this is an update on my previous post when my dermatologist and I thought I had psoriasis on my left arm.  I had a biopsy last week  My dermatologist called me today with the diagnosis.  I have lichen planus. 

She is prescribing Fluocinonide 0.05% cream.  Have any of you used this cream?

I am wondering about the relation of his lichen planus to lichen planopilaris, which apparently causes Frontal Fibrosing Alopecia.

Also in reading about lichen planus, I found that you can get it if you have had hepatitis C.  (I might have had an undiagnosed case of it or received a transfusion as an infant of hepatitis tainted blood.)  It also can be a reaction to flu shots.  I had my shot earlier this month.

Hello Elizabeth, I just want you to know that we are here for you and understand what you are going thru.  I do have eczema but I do not have psoriasis.  I had my first appt today with my dermatologist. I had 2 prior teleconferences due to covid. I have not tried the cream you reference but I guess I would trust the doctor’s recommendation.   We are with you as you go thru this.  All the Best!

I should add that I have FFA.

Hi Elizabeth

thank you for sharing, I hope the cream works quickly and relives the symptoms for you.  I too have FFA, LLP and LP.... feels like a curse doesn’t it.  

Can I ask if your hair loss has stabilised?   It looks good in your photograph.  

The activity in this thread has reduced significantly...I wonder how everyone is and if this condition is influenced by stressful situations how everyone is responding to Covid-19? 

take care Elizabeth 

HI Afraid,

Thanks for your kind words.  I think my hair loss has been stable for a couple of years.  My photo is 2 or 3 years old. 

It has been a stressful time. I am not sure why there has been less activity on this forum.

Hi ladies!

Yes, it’s been awhile since I was here too. So long that I was logged out from the site. It’s nice to see familiar names pop up in the notifications.

I’m happy to report that I’m still fairly stable. Still using castor oil 3-5 times a week. I got lazy about doing it initially during lockdown and I noticed increased shed-so back to being diligent about it. I let my pixie grow out because of lockdown. Once I got back to my stylist I kept some of the length and it’s a modified bowl cut, inverse Dorothy Hamilton or early Justin Bieber. It’s kinda fun. 

I had my brows redone. It’s been over 3 years and the old microblading had faded a lot. This time I got hybrid brows. They look great and the healing process was much easier and quicker than plain microblading. I got back in 2weeks for a touch up and then they will be perfect. This stylist plans for yearly touch ups. I’m going to do that. I don’t miss drawing these suckers on every morning!

I hope everyone has navigated COVID and the lockdowns okay where ever you are. Stay safe and healthy! 

Hi Everyone, I am wondering if someone can help me with this technical issue. I received an email from this site (which I am a member of) from a member named Louise. She was asking about possible connections between FFA and the flu vaccine. I have looked everywhere on this site, but cannot actually find her post or discussion, and it's not in my inbox, even though the email said it was sent out to all members of the FFA group. Anyway, I would like to respond to her, but I can't find her. If anyone knows how I can find her message, please let me know. Thank you so much! 

Hi Maddy, 

You can communicate with me in this site. 

Best regards 

Louise

Hi Louise,

My story sounds very much like your own. Mine started in 2006. I had a really BAD flu in 2005, so in 2006, I got my very first flu vaccine. Within a few weeks, I noticed red bumps on the hairline on the top of my head and one of my temples started to thin. Didn't connect it. Got another flu shot in 2007, both temples thinned and noticed a bit of loss on the hairline on top...still didn't connect it. After my third and final flu shot in 2008, I lost all hair on my temples and about 1/2 inch on top. Finally...I connected it and went to several doctors (endocrinologist and immunologist) who both said that the flu vaccine could be causing it (all the derms I went to said it wasn't likely connected). Anyway, long story, sort of short, I have not had a flu shot since and I have not had any more hair loss or flare-ups. Oh, and, my brows thinned in there somewhere too and hair on arms is almost completely gone. Anyway, just wanted you to know that you are not alone with this connection!

Here is a link to  PUBMED abstracts about the link between getting flu shots and other vaccines with Lichen Planus.  https://pubmed.ncbi.nlm.nih.gov/21051866/

All you get is a summary. You can click on the DOI number and get the image of the first page of the article. It looks like they have case studies.  These articles about at least 10 years old.

I've had flu shots since the late 1970s and my last one on September 1, but my lichen planus symptoms started about a month before the shot.

Trying a new bonded hair piece. One with a little more sass!

hi CurlyK,

Wow I think that style looks really great on you! 

I haven’t been on here in a while, but nice to read through all the comments. 

Thanks so much for sharing.

Hi, I was wondering if anyone with FFA had any success with hair extensions or Lucinda Ellery interlace system? Looking into both

options as my daughters wedding is coming up and would like to make fringe and sides look fuller. The interlace system seems a big step and very expensive. Any advice would be greatly appreciated.

Hi sammi,

This group has been pretty quiet lately. I wish I had answers for you. I would like to get the same advice!

Ann

Hi Ladies, it’s been a while ... thankfully my FFA had been relatively stable for the the last 1.5 years. So much so that my Dr started discussing transplant options ... BUT .. over the last month I have had a massive shedding episode. I’m devastated! I can see where the hair has receded behind my ears. It’s looking sparse & wirey & crazy witch like. It’s horrible!! Thickness all over is down now at least 50%. I’ve got a scraggy, thin little pony tail where it used to be thick & lush. I don’t see my Dr again till August- I don’t know I can wait that long for help although I know there’s nothing she dan do :(

Thanks for listening 

Hi ladies,  so sorry Lu, I feel your words,  my FFA symptoms increase when I am under stress. Is there any way you can lessen stress?

A doctor at Massachusetts General found in a study that 76% of patients with FFA and LPP were allergic to ingredients in hair products and facial moisturizers and personal care products.  That’s huge.

 Fragrance, gallates, Linalool, methylchloroisothiazolinone, MCI/MI, were indicated as some of the ingredients that patients were allergic to.  The doctor found that without changing anything else in the treatment plan, eliminating the allergen for 3 months resulted in 59% having decreased scalp itch and 70% had decreased scalp redness.  The doctor recommended patch testing to determine what personal care products we may be allergic to.  There were more chemicals than I listed but the chemicals I listed had larger percentages of patients being allergic to that chemical. The doctor said avoiding the allergen greatly lessened the FFA symptoms but did not cure FFA.

Another thing I find interesting is that some products contain formaldehyde releases such as bromopol, DMDM hydantoin, quaternium-15, diazolidinyl urea polyoxymethylene urea, and sodium hydroxymethylglycinate.  We know with FFA our stem cells in our hair follicles are dying so our hair loss is permanent. So why are we washing our hair with formaldehyde?

I will try to find the article and post the link.

Best to all you lovely ladies. I miss the activity on this site.

Hi

I response to Toby I can attest that using Vanicream's Daily  Mosturizer, and their sunscreen  ( can't remember the name but it is a broad spectrum) and also the same company's shampoo called Fresh and Clear,  ( I use the medicated one) has been HUGE.   It's made by the Mayo Clinic and has zero allergens.. I guess that before using them was part of my problem because I have used these products exclusively for a year now in conjunction with being on Hydroxycloroquine 200mg once a day which I started a year ago also.  I have been on Finasteride for 4 years now - I hadn't really noticed any great shakes from using this to be honest  but don't want to risk stopping it.  I might though because I think it makes your sex drive like zero.  I have FFA and Female Pattern Baldness combined ( oh joy oh joy ) .  But I have to say that this past year ( in a pandemic I might add ) my hair has somewhat grown in!!!!!! , is much thicker and I don't even think about the thin areas for days at a time.  I find it looks best a day or two after washing it as it thickens up but I doubt anyone would notice anymore that I have thin areas.  And they certainly would have a year ago.  Hope this helps someone out there.. Drs. say I am a success story .. Ha.. Oh- I use minoxidil religiously twice a day ( the 5 %).  

Hi there. I have not been on here in years, but I just saw a comment come through from Louise, who seems to be struggling. BUT, I don't know how to find that thread. :-(

Anyone know how?

Thanks!

Melanie

Hi Melanie. I haven’t been on here is a long time but I received the same email. I can’t find her or that post on here either…

Hi CurlyK and Mel-

I’m trying to find Louise’s post too!

@illustr8r @CurlyK - OK, thank you. :-)

I hope someone was able to message Louise to give her a little support.  When I search up Louise there is only one that comes up in our group.  Swedish Louise?  Push through Louise.  We are here if you need to talk more as I'm sure many in this group have had similar experiences.  If things are really at that their lowest please make the courageous step and talk to a health professional such as a psychologist.  A psychologist isn't going to judge you, they are going to want to help you. Do you have any government support for financial assistance with purchasing wigs?  In Australia when it is over $1000 a year you can claim them on Tax and if you are of low income there is other help available to assist with purchase.    My favourite wig cost $400 AU (synthetic).    We are all here if you need us Louise.  Take care.  

Time of a laugh everyone.  I think Elon Musk has been on this website.  He has stolen my haircut!  I may yet get "I love Elon" tattooed on the side of my balding head.    Screen%20Shot%202022-01-06%20at%208.35.24%20pm.png

Nerida, How do we access that money in Australia? No one has suggested that to me. I live in Sydney.

Tessa, 

Most individuals will qualify for a tax rebate on their wig under the Taxation Ruling TR93/34. Section 159P of this ruling allows for tax rebates on net medical expenses. Those expenses include the cost of medical or surgical appliances that are prescribed by a qualified medical professional, such as a medical or surgical wig. Individuals are entitled to a rebate for net medical expenses that exceed $1,000. I've known about this for awhile and haven't done it yet but this year I will.  I've been keeping my receipts and will give them to the accountant at tax time.  Sometime between now and then when I'm seeing the doctor for some other reason I'll ask him for a note just in case it's needed to prove I've got alopecia.

Also, sometimes it can get covered in part by private health insurance depending on provider and extras cover.  I'm not covered by mine with NIB.

In NSW there is a program called Enable NSW but it's a government program so it's not the easiest to figure out.   enable.health.nsw.gov.au  I haven't used this program.  I was just looking at the criteria and I'm shocked to see that FAA is not on the list, I thought it was.   If you have Alopecia Areata, Tichotillomania, Androgenic Alopecia, cancer or temporary hair loss it's seems pretty cut and dry but FAA might need a further application or at least a discussion with someone in that department. Looks like it would be worth the ring around.  As a side note QLD , NT and ACT don't have any programs that I'm aware of.  

When it comes to the next tax year I'll let everyone know how I got on with mine.

Hi,

Just started the 7th year with FFA. 

Soo.. many treatments, nothing works. 

Soo.. many hair pieces, no one works

Soo.. many therapists, no one works

Soo...many lost years

Soo..much hatred

Soo.. Isolated

NO love

Wasted life

Biggest fear to die bold

Anyone here with the same feelings

Hi, I would like to comment on Louise's comment but I'm not sure how. I've tried clicking on her name highlighted in blue but I get a page saying that what I'm trying to do is not allowed. I just wanted to tell her how much I appreciate her honesty. Everyone on here is so positive but for me FFA really sucks and really hurts and it's feels good to know that someone else feels the same way I do.