Questions regarding lichen planopilaris

I was recently diagnosed with lichen planopilaris.  I have lost most of my eyebrows and just starting with a receeding hair line.

I am looking for suggestions regarding what to do with my hair.  I currently have sholder length hair but would like to be able to cover my fore head with bangs, which I don't currently have.  If anyone lives in NJ and can suggest a hair salon that is good with short hair, that would be great. 

I have noticed that when I try to blow dry my hair, my fore head becomes red.  Going to Derm on Friday but thought I would run it past everyone on the board.

Thanks,

Ellen

 

 

 

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Permalink Reply by Debs on September 1, 2014 at 6:41am
Ellen, i think you have a varient of LPP called frontal fibrosing alopecia FFA. Starts with loss/thinning of eyebrows and recession of hair at front hairline and temples. Please see the frontal fibrosing alopecia group on this site. I have typed up a fact sheet based on all the info derms have given ladies in our group. Please contact me if you would like this fact sheet so you are fully informed before you see a derm. I will send you a friend request so we can easily communicate.
Permalink Reply by Houle on September 1, 2014 at 8:21am

Hi Deb.

 

Thanks for responding.  If you could please send me the info sheet that would be great.  This way I will be ready when I seen the Derm on Friday. 

The doctor has been pretty good with answering my questions but I am sure that there are things that I am missing.

 

Do you suffer from Alopecia as well?

 

 

Permalink Reply by Debs on September 1, 2014 at 10:26am
Yes, i have frontal fibrosing alopecia. I was diagnosed in Dec 2011. Please respond to the friends request I have sent and i can give you my private email to contact me then i can send fact sheet as an attachment. Or look up my email on the FFA group on this site
Permalink Reply by Houle on September 1, 2014 at 3:41pm

Hi Deb.  I had accepted your invite the other day.  If it did not go through let me know. 

Thanks,

Ellen

Permalink Reply by Sad in chicago on September 1, 2014 at 10:26pm
I have frontal fibrosis alopecia as well. It was originally diagnosed as female pattern baldness but it is not. I also have lost quite a lot of my front hairline and around my temples. It is tough but with a clip on piece to cover my receding hairline I am doing
G my best to make it work. It took a while before I sought coverage after trying also with bangs. My eyebrows are also pretty much gone as well as face fuzz, arm and leg hair. I was told there is no cure or remedy so I stopped trying.
Permalink Reply by Houle on September 2, 2014 at 4:23pm

I am currently trying to decide how to cover my frontal hair lost.  I am not a big fan of bangs, so I hesitate to go that route. 

I too have lost most of my eyebrows and have noticed that the hair on my legs is not growing like it use to.  I never associated the two together. 

I still plan on talking to my Gyno to be sure that some of this is not related to menopause. 

Permalink Reply by Sad in chicago on September 2, 2014 at 4:31pm

Actually, I found it is more common with women post menopause....FFA that is. Bum

Permalink Reply by Kojack on November 5, 2014 at 12:52pm
Sad In Chicago -- u pretty much described my condition exactly. There is no cure, lost hair will not grow back, but my understanding is that u can take steps/treatment to try to stop further hair loss. Now whether these treatments work or not is another question. Would be curious to know from others if they have noticed positive results in terms of arresting further hair loss. If not, then perhaps I should stop my treatments, also.
And to Houle -- I am post menopausal, 68 yrs old.
Permalink Reply by MCM on September 7, 2014 at 4:13pm

Hi Ellen!

I was diagnosed with Lichen Planopilaris about two years ago.  I live in NJ and my hair person comes to my house because my hair loss is so bad, I will not go into a salon.  Do you want her name?    

Permalink Reply by Houle on September 7, 2014 at 5:56pm

Hi MCM.

 

That would be wonderful.  I really want to go to someone that can help style my hair and has knowledge of LP. 

 

Thank you so much,

Ellen

Permalink Reply by MCM on September 7, 2014 at 6:06pm

Her name is Janelle Kubiak and her number is 609-247-2587.  Please tell her Maria sent you. Take a look at the attachment...this is the human hair wig she designed and she had custom made for me.  She specializes in Alopecia and is becoming very knowledgeable about LP (since I have that :) ).  There is no cure for LP and there is no cure for the itching and burning...but there are topical meds that can help you calm the red, burning and itching.  I will be more then happy to talk further about this with you.  I am here for you...we have to support each other my friend.  :) 

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Permalink Reply by Houle on September 8, 2014 at 3:07pm

Maria:

Wow, that wig is great and looks just like your own hair. 

I was just diagnosed and currently only have a problem on the side of my head and front scalp.  I would say we caught it early but  from everything I am reading I will keep losing more hair. 

I am currently using two meds to help with the inflammation.  The Derm did say there is an oral medication but that I guess there has been an issue with it causing cancer.   I have enough cancers on both sides of the family that I hesitated taking it. 

My biggest question about cutting my hair is will the hair I have grow?

I am going away, for vacation, the rest of the week but will give her a call when I get back.

Thank you so much.  It really is hard to find someone to cut your hair who understands.

Ellen

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