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Comment by Marilyn on December 7, 2015 at 10:03am

My derm also said I may have other hair loss issues like thinning but didn't mention any alopecia except the diagnosed ffa!!   I'm in the age group where I believe many have thinning issues-ugh!  Hope this helps.

Comment by SJC on December 6, 2015 at 11:04pm

Can anyone share whether they have multiple types of alopecia  in addition to FFA?  I was originally diagnosed with FFA only, yet now my derm believes I have a secondary form of alopecia which is resulting in major shedding on my whole head.  There are days where I truly wish I had the courage to shave it or that it would simply all fall out.  At least then I wouldn't worry any longer nor would I feel in limbo with one foot in and one foot out of the alopecia doorway. 

Comment by Jen on December 3, 2015 at 8:23pm

LIz,

Congratulations on finding a solution. It is wonderful that you share this with us. Happy Holidays.

Comment by Liz on December 3, 2015 at 3:24pm

Hi Kat. Thanks for the friend request. I see that you sent me your email. When I pressed yes to accept your request your email address disappeared. Please can you send me it again. How fabulous that you live in Brighton too! :) xx

Comment by Kat on December 3, 2015 at 2:36pm

Thanks Liz! it sounds amazing (besides the price) ;) I think I will have a look into it and also ask my derm if there is any funding available to help with cost. I cant even imagine going swimming and getting the hair wet in public anymore... wow! I have seen that you are also from Brighton! :) yes, i would love to see a picture if you are OK with that? no worries if you change yiur mind! i will try and message you my email! Thank You!! :) x

Comment by Liz on December 3, 2015 at 2:21pm

Hi Kat. The system covers the bits that are bald but also, due to the length of my own hair, it covers the remainder of my own hair. There is a mesh covering the bald bit and they pull your own hair through at the edges to secure it. They then connect and sew in real hair which closely matches your own. I wanted a natural hairline so right at the front I do have to put a little piece of tape to hold it down. The system is expensive. It's around £2000 for the initial system which should last for 2 years. However you have to have the connections adjusted every 2 months and they charge an hourly rate. A friend of mine has the same system. She has had it for a few years and her hair looks lovely. She swims in the sea every day and so it seems quite strong. If you would like me to email you some photos message me and let me know your email. xx

Comment by Kat on December 3, 2015 at 1:41pm

oh Liz, that sounds so exciting. Can I ask if the systhem only covers the parts that are bald? and do they use your hair for the pieces or other real/fake hair? i do start missing my frontal hair more and more and often find the efforts around getting ready to show myself to the outside world quite tiring and stressfull and sometimes upsetting. I have managed to get some of my eyebrows back and add and fill in with the eyebrow kit from benefit which works well so far. But - this lace systhem does sound promising, though i fear also very expensive... currently i wear a wide headband like you on your photo. but i always worry that it has moved after wild hugs of my kids or wearing a hood and so on. i am lucky to have lots of curly hair on the rest of the head, so most people dont notice. its weird when they comment on the nice hair - it sometimes actualy chokes me as I know that it actually isnt and how stressful it is to maintain it looking 'normal'... I havent been actuve on this board much , but reading the posts does make me feel less alone with this stupid 'illness'! :) so: Thanks to all you brave ladies out there on this forum that comment and discuss!! xx

Comment by Liz on December 3, 2015 at 1:21pm

MnM. Yes it a system from Lucinda Ellery. I've had a lot of lovely comments about my hair over the past few days, since having it done. I'm also getting used to having hair blowing in my face for the first time in about 4 years!

Comment by Lauren on December 2, 2015 at 3:40pm

Do you think the scratching would have given a false positive for the biopsy, like the biopsy showed the type of inflammation from LPP/FAA simply from having been scratched enough?

Comment by MnM on December 2, 2015 at 9:38am

Lauren, I doubt you lost more hair by scratching, I wouldn't worry yourself. My inflammation/scaling/itching is on my front hair line and that hair loss has been the slowest. My temples, where I have lost more than an inch have never even itched, I just had pimple looking things at the hair follicle. I think FFA symptoms vary from person to person and even within the same person. Don't worry yourself about having made it worse. Either way I hope it slows for you!

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