Comment

Comment by Sad in chicago on April 21, 2016 at 2:53pm

Hello, and thank you.  I am going to try out World Hair Institute in Chicago early May and will keep all posted.  I presently have a pretty good topper but am unhappy for summer, working out, etc. and am interested in the intralace system.  I tried Lucinda Ellery but they are nowhere near Chicago and I cannot maintain a system long distance.  I requested a referral or resource from them, but they would not help as they said they could not vouch for anyone else.  It was through this discussion that I found the World Hair Institute.  I will let everyone in the Chicago and/or Midwest area know about my experience there checking it out and seeing if they can manage my appearance in an easier manner.

In terms of my general appearance, it seems very few people "know" except for the very few I have told; my topper is very expensive, high quality and I am appreciative the vendor I went to is experienced, sympathetic and has many options available both financially and aestetically.  

However, now that it is Spring again, everyday is a challenge.  Somehow dead cold winter makes it easier to look ok and not worry about the piece.  But spring and summer wipe me out and I have pretty much stopped working out, being healthy or doing what I should and love and want to do as I am ALWAYS worried, never feeling natural, and embarassed.  I can't even stand being alone in the house with my husband without my pieces....I do, of course, but when I wake up and walk past the mirror I cannot believe it is me there.  Between the increasing recession around my whole face, the different color of my skin, the thinness of the rest of my hair, and lack of eyebrows, I am pretty much beside myself.

OK, enough whining.  I am at work, with my piece, no one knows and I look OK.  I am not sick and no one died.....all good.

Comment by DeniseC on April 21, 2016 at 6:46am

Whoops! Just realised how long my post was. Sorry everyone!

Denise

Comment by DeniseC on April 21, 2016 at 6:45am

Hi Terry

I know PRECISELY how you feel. I had an Intralace System fitted two months ago, after months of faffing around, feeling more and more demoralised by my ever-disappearing hair. So how have I found it - hand on heart?

Almost completely amazing! The thing that best exemplifies how it has affected me is that two weeks ago we went to a wedding. Before this, I would have avoided photos like the plague - I am 65, so the (sadly) natual ageing process and the diminished hair combined, led me to feel I looked like some ancient crone. However, at this wedding, I didn't quite rush to the camera, but was perfectly happy to be snapped. Yeay!

The joy of the System over a wig or topper (not that I have had either) is that it is a prosthesis, so stays put - no more worrying about windy days (I so recognise your feelings) and blends in completely with your own hair. My confidence has grown and grown - and this from someone who is known for being strong and confident in general. FFA just knocks the stuffing from you, I know.

I am assuming you went to Lucinda Ellory - that's where I went. They are GREAT - taking so much care, and normalising the whole thing, which also helped me come to terms not just with the solution, but the condition itself. I am unfortunate, not a lesser person, just because my hair follicles have been attacked and destroyed.

The day after I had the System fitted, I found a slight problem in that the colour of the Intralace hair piece (entirely at the top and front for me - not the back or sides) was slightly out with the rest of my (dyed) hair. Lucinda Ellory could not have responded better and sorted it out immediately.

So what are the downsides? Cost - it ain't cheap. But, for me, I would rather spend my money on this as it makes me feel so much better.

Haircare takes significantly longer - before the FFA I was a wash and go type person. I have naturally curly/wavy hair which really didn't need even blowdrying. The FFA stopped that, of course. And now, with the Intralace System, I have to plan haircare into my day (probably lots of women already do that anyway!). My hair is short and when I wake in the morning I look like a coconut, with the Intralace hair stuck up on end and my own hair flat at the back. Not a good look! But a bit of water and brushing calms it all down.

Hair washing definitely takes longer as I now use various products and have (for me at least) the undoubted struggle with the tape that sticks the front of the System to my forehead. It is so very sticky I find it somewhat hard to manage.So I have learned to allow time for that, rather than attempt it when I have two minutes to get out of the house.

The only other vaguely challenging thing for me has been to get the style right. If you have straight hair, medium/long length or in a bob, it would all be straightforward, I suspect, but my hair is layered and short. Initially, the Intralace hair was just too heavy - it's a very different hair type to my own, and although we now have sorted out the colour, it still responds differently. However, my own hairdresser has now thinned it out a bit, and it looks great - no one would know it wasn't my own hair.

And that, Terry, is what makes it all worthwhile - I have my hair back. It might mean I have to place a greater focus on my hair than I needed to before FFA, and it might take time to get exactly as I want, but I look like me again, wrinkles and all!

So, if you can afford it, go for it. In the immortal Clairol words - you are worth it.

And if you want to talk, I am happy to do so - not sure how you organise that on this forum, but I am sure we can do so. Might help you.

Good luck - and have faith .... it can, and will, get better. Just by going for the consultation you have started to take back some control over this horrid condition.

Denise x

Comment by Liz on April 14, 2016 at 10:39am

Hi. I have a dark brown wig that has been used twice. If anyone would like it I'd be happy to post it to them. It's a short bob and bought at Trendco. It's going for free as I'd rather it got some use and I now have an intralace system x

Comment by Maddy, California, U.S. on April 4, 2016 at 11:43pm

CARF sent out this email today regarding a British study that was recently published. Just wanted to make sure everyone got to see it.

Recently, an article was published in the British Journal of Dermatology titled, “Frontal Fibrosing Alopecia - Possible Association with Leave-on Facial Skin Care Products and Sunscreens; A Questionnaire Study” by authors, N. Aldoori, K. Dobson, C.R. Holden, A.J. McDonagh, M. Harries, A.G. Messenger, out of Royal Hallamshire Hospital and Manchester University. The abstract is included below.   After reading the abstract, we expect many patients may be asking, “Do I stop using sunscreen?”   While CARF wishes we had the answer to this question, we must state that CARF cannot dispense medical advice. We suggest that you discuss the article with your physician/dermatologist about your specific case and continue a treatment plan that is best for you.   What CARF is doing regarding this new news of a potential association between topical products, particularly sunscreens, is to work with our Scientific Advisors. The Scientific Advisors are already in email discussions about the findings and will further discuss this topic at the upcoming CARF Research Symposium & Roundtable on May 11, 2016, at the annual meeting of the Society for Investigative Dermatology. Please remember, as exciting as this research appears, as with all science, it is important to further investigate, corroborate the results, and understand the mechanisms of action. Dr. Elise Olsen at Duke University is leading a separate multi-center data collection research study on FFA in the U.S. We look forward to results (soon) from this study. Perhaps the findings from her study will bring more information to us on the recent findings.    Abstract BACKGROUND: Since its first description in 1994 frontal fibrosing alopecia (FFA) has become increasingly common, suggesting that environmental factors are involved in the aetiology. OBJECTIVE: To identify possible causative environmental factors in frontal fibrosing alopecia. METHODS: A questionnaire enquiring about exposure to a wide range of lifestyle, social and medical factors was completed by 105 women with FFA and 100 age and sex-matched control subjects. A sub-cohort of women with FFA was patch-tested to an extended British standard series of allergens. RESULTS: The use of sunscreens was significantly greater in the FFA group compared to controls. FFA subjects also showed a trend towards more frequent use of facial moisturisers and foundations but, compared to controls, the difference in frequencies just failed to reach statistical significance. The frequency of hair shampooing, oral contraceptive use, hair colouring and facial hair removal were significantly lower in the FFA group than in controls. Thyroid disease was more common in FFA subjects than controls and there was a high frequency of positive patch tests in women with FFA, mainly to fragrances. CONCLUSIONS: Our findings suggest an association between FFA and the use of facial skin care products. The high frequency of sunscreen use in patients with FFA, and the fact that many facial skin care products now contain sunscreens, raises the possibility of a causative role for sunscreen chemicals. The high frequency of positive patch tests in women with FFA and the association with thyroid disease may indicate a predisposition to immune-mediated disease.

Comment by Lisa D on April 4, 2016 at 6:26pm

Joy- I am very interested in trying what you have tried. I am leery about taking the medicines, not only because of side effects, but also because no one seems to think they have worked. There seem to be  many varieties  of Mega stress tabs (Vitamin B Complex) with different amounts of each ingredient  and/or additional supplements. What brand of B complex, milk thistle and adrenaplex do you use?

Comment by Lisa D on April 3, 2016 at 7:37pm

Kikibob- This is the first time I have commented but have been following this group's discussions. I was diagnosed with FFA and/or LPP around January 2015. I had been treated for several years prior for itchy red scalp. I thought my hairline was receding in certain spots from aging. The doctor is the one who realized what it was and verified it with a biopsy. She suggested Plaquenil, but I have chosen not to use that yet. I used Clobetesol solution and had a bad reaction (inflammation, burning,  and sores) last spring so the derm put me on Fluocinolone Acetonide .01% scalp oil that you have to use nightly, wear a shower cap to bed and wash out every morning. It helped calm my scalp but washing my already dry hair with it even every other day was ruining my hair.  Then my original  diagnosing dermatologist went on medical leave and I saw another who prescribed the Clobetesol Foam but my insurance would not pay for it. Does anyone know how to get them to cover it? She started  me in the fall using Rogaine every night and Olux or OluxE samples every other night. There was no mention of 14 days. Things seemed to be a little better and I even had some regrowth by January. Don't know if it was added stress (my dad passed away in February ) or what but when I saw my original derm in March, she wanted to give me the injections because my scalp was now inflamed again. I am reluctant to do the injections and have stalled hoping things will calm down. Meanwhile the other derm  has run out of samples so I have not used anything for the past week. I am wondering how to get insurance to cover the  the OLux/E if it's the only one I can use without getting a bad reaction. Also wondering if anyone else has tried Joy's protocol since she seems to be having success?

Comment by CarolJ on April 3, 2016 at 3:34pm

Joy, I just read the article on Epstein Bar virus. I was interested in that because I just read something recently about Epstein Bar having something to do with autoimmune disease. This article was very informative. Thank you for sharing the info! I am currently on the AIP diet and it's going well. I also use the essential oils on my scalp and take several supplements. I'm 47 and although my Dr. says staying on birth control pills is safe till 50 I decided to stop taking those to help detox my liver. At this time I can't really tell if hair loss has slowed down or stopped since it's so slow going to begin with, but I feel my best bet is to try and heal from the inside out. I was only diagnosed 6 weeks ago so I plan on keeping on this path. Very thankful for this group! Lots of good info shared!

Comment by Karen on April 3, 2016 at 2:21pm

Has anyone tried carboxy and mesotherapy injections, and if so, what was it like?
I have been invited to try it at my Trichologist's clinic, but am a bit nervous as I don't want to pin my hopes on it working, only to be disappointed.
Any help, views or advice would be welcomed.

Comment by Joy on April 3, 2016 at 12:39am

I am still doing good - no more hair loss or itching - tried rogaine for a while but it seemed to irritate the very front of my hairline which is still ever so slightly inflamed from the LPP.  I still have taken no meds and have kept up my vitamin usage - I have also used thyme, rosemary, lavender and cedarwood essential  oils mixed with some coconut or argon oil on the areas I have lost hair - it is suppose to help hair regrowth and at this point for me I think that is a better alternative than the rogaine.  My daughter has sent me and interesting article on Epstein Barr virus - the article is on Goop and called The Medical Medium and What's Potentially at the Root of Medical Mysteries.  This fits alot of what we all complain of but I am and always have been pretty high energy but who knows no one seems to know what causes FFP or what stops it - I still recommend vitamins - this article says alot about zinc and b vitamin deficiencies which I think have come up before in various posts

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