Comment

Comment by DeniseC on August 18, 2016 at 4:41am

Interesting, isn't it? On the one hand, we need the extent of this condition to be established and publicised, so more is done - not only for us, but for the next generation and the next, because if it is environmental in origin, then it is likely to hit them more.

Yet on the other hand, it is so demoralising and challenging to confidence, we all hide it as much as is humanely possible. I had never heard of FFA until it happened to me and even then I was misdiagnosed to begin with ('it's your age, dear').

At the Olympics, one of 'our' Team GB cyclists - Joanna Rowsell Shand, gold medal winner in the team pursuit - clearly has alopecia. She completed her rides bald, and then accepted her medal bald. But then, commentating on the BBC for the rest of the cycling programme, she had a wig.

I understand that - and I strongly believe it is every woman's/ man's choice to do whatever they choose, but it is possibly yet another message of how difficult it is to accept alopecia as a condition.

That's why this forum is important.

Comment by DW on August 18, 2016 at 12:07am

@Geminijeanne, I also am from Canada (Toronto) and have recently met another FFA sufferer from North Bay, Ontario. It helps to know there are others out there to lean on and to derive support from when needed. And of course, to lend support to, share experiences, advice and suggestions. We need to spread the word and get this miserable condition exposed. I believe (unfortunately) we are far more in number than we can possibly imagine. Perhaps if it becomes evident how widespread this condition is, there may be more time and money allocated to research and ultimately a treatment, or better yet, a cure and prevention.

Comment by Marian on August 17, 2016 at 11:14pm

@Geminijeanne where in Canada are you? I am super jealous of those of you who are able to use Lucinda Ellery. I have searched high and low for a similar system in Canada. Like I said before the extensions have beefed up the sides but they are at best a short term solution. I would love to get a good interlace, give up the drugs and call it a day!

Comment by Minter on August 17, 2016 at 10:57pm

Ohhhh MnM, I'm glad I am not alone in being headband/scarf challenged! :-(  I wish there was a class I could go to on how to wear them stylishly :-) I do have a couple of baseball caps, but the problem is that once it is on my head, it's on for good for the day, as otherwise I am stuck with hat hair, sigh.  Maybe I should try a jaunty beret instead!

Comment by MnM on August 17, 2016 at 3:53pm

Minter I know the feeling!! I have sooo many scarves & headbands and have yet to wear them. They look so cute on other people a ridiculous on me. For now I just throw a hat on for the gym or if it's a really windy day and I have to be outside I opt for a baseball cap. My collection of those is slowly building!

Comment by cubbieblue on August 17, 2016 at 3:22pm

@Sad in Chicago, did you get your Intralace system and how do you like it?

Comment by Minter on August 17, 2016 at 1:48pm

Yes, I kind of stepped back from my laptop and gasped a bit when I saw the cost for the Intralace system! I do have some time, I think, I hope, or maybe I will never need it, but it is good to know there is that option. I am about 2 hours north of NYC, so that is something to consider besides the price, do I want to travel down there every two months.

BU US Illinois, how I wish I could wear headbands and scarves :-(  No matter how I try I just look dopy.  I actually have a collection of scarves, because I love them, I just can't wear them, I do envy people who can carry that look off, lucky you!! 

Geminijeanne , yes, it does feel like grasping at straws with FFA :-(

Comment by GEMINIJEANNE on August 17, 2016 at 12:59pm

Well I'm staying up to date with everyone's comments and suggestions ! I will be seeing my dermatologist and family doctor next week and have a ton of questions for them about different treatments. I am into my 5th year of this disease and have lost every bit of hair on my arms , legs , eyebrows etc. I have lost about 2 inches or more around my face . I have tiny skin bumps and rosacea as well so it seems I am full blown FFA. My latest drug from the dermatologist is making my eyes blur but that's all. The itching still goes on regularly so I'm using Clobetasol for that. What a learning process this is. The first thing I've had to do is to come to terms with having much less hair. I purchased a human hair wig which helps to make life a bit easier. Some days I get so depressed about it all - thank God I'm on a anxiety pill daily - ( celebrex ) . Again , I wonder if it contributes to this FFA. I question everything I do now from my makeup to my cleansers to my food and medication. I wonder just whether or not any of these have a bearing on this disease. 

This support group has given me comfort in knowing that I'm not alone in this - although it seems not too many cases on here from Canada. I gather info from all your posts and try to sort through it all to see if anything can help or if I can pull some advice from the posts . Lets face it folks , we are grasping at straws because this is a disease with many unknowns . Take care everyone and keep your spirits up. 

Comment by DeniseC on August 17, 2016 at 12:10pm

It certainly helps to know there are many of us out there who know what you feel.

x

Comment by DeniseC on August 17, 2016 at 10:29am

Have a look on the web - Lucinda Ellory. I know they have clinics in NY and LA, and I also know (as I talked with Lucinda's son, who is the director of the London clinic) that they would like to cover more of the US.

Cost - roughly £1500 for the first appointment, where they attach the system and colour and attach the hair, and (obviously) style it. I was in the clinic for about six hours, but was plied with cocktails!

Then every six weeks you have to have the system adjusted as your own hair pushes it up - that's around £75 - £100 each time.

The first payment includes one replacement hair piece, so (I am assuming as haven't done this yet) I will just pay for the time. Or maybe not. Not sure.

And then every two years you have to have the same thing all over again.

In terms of other costs, I use the shampoo, hair mask and other products they recommend, but buy them on the internet - not excessively expensive.

And all of this is on top of the ongoing costs with my own hairdresser. This is a really important element, as my own hair is grey and I colour it. And of course the hair piece doesn't change colour, or fade, at the same rate as my own hair.

So it's not cheap, but it is good, and, for me at least, well worth it. No one who doesn't know I have had it done has a clue - to begin with I got lots of 'what have you done to your hair?' and 'your hair looks great. Have you had a new cut/colour?'

I know the company want to expand in the US and I told them about this site and how many people in the US were interested. So if their existing clinics are no good for you, email them and ask when they are expanding. The more people ask for it, the sooner it will be!

Good luck

Denise

• ‹ Previous
• 1
• …
• 166
• 167
• 168
• 169
• 170
• …
• 507
• Next ›
• Page