Comment

Comment by Meme on August 12, 2014 at 3:37am

Hi CJ, I have had FFA for over 10 years now. When I first noticed my hair receding I went to the doctor straight away. But not to bore you with a very long story, the nhs doctors at my local hospital hadn’t a clue and basically weren’t interested. I have recently seen a doctor at Guy’s hospital who I found from this site who is trying to research into ffa but even he was upfront and admitted there was no magical cure. I personally have never taken any of the drug treatments (not that I was offered them anyway) however if you read back over the correspondence on the site several ladies have with varying success. Some of us met up earlier in the year and this I found really helpful as one of the ladies has gone down the route of a hair piece which looked amazing, you really couldn’t tell. I know that that is the route I will next have to take. I didn’t want to write in a negative way I’m just being honest and I am sure the other ladies will tell you that we have all learnt to cope in our own ways.  If you think seeing another doctor will help go ahead . I know some of the ladies do see private doctors. It might be worth while putting a message out asking if anyone can suggest or recommend a doctor.

I hate my ffa but I have put it in perspective and I am just getting on with my life. I wish you all the best and if you just need to talk sometime you are welcome to private message me.  Meme

Comment by CJ on August 12, 2014 at 1:48am

Hi PamW thank you for replying. It is difficult to know where to start and the nhs doctors just aren't taking me seriously so I think I will stay private for the time being. Is planquenil the anti malarial drug? I have tried to do a lot of reading around the subject but am feeling very emotional about it all. Have many people managed to get it to slow down or stop at all? Mine is already an inch and a half back.

Comment by PamW San Diego, CA, USA on August 12, 2014 at 1:26am

Hi, CJ. I think everyone here will tell you that it is very important to start treatment as soon as possible because many of the treatments can take months before they begin to work. For example, Plaquenil can take 3 to 6 months to work. Since the hair loss is permanent, you want to stop it or slow it as soon as possible. Can't advise you about the doctors in the UK, but I know several,of the ladies on this board have seen Dr. Harries (sp?). Best of luck to you.

Comment by CJ on August 12, 2014 at 1:18am

Hi all. I am new to the site and have bren diagnosed with FFA in the last week. I have seen a consultant dermatologist in london who has put me on dermovate but I have since read that it has no effect. I have found a dermatologist locally who specialises in scarring hairloss and who is doing studies - do you think I should see him instead/aswell? Currently bypassing the nhs as I have been told it will be a really longwinded process and mine seems to be progressing rather quickly. Thanks in advance.

Comment by Jules UK on July 30, 2014 at 2:57pm

Hi all, the forum's been very quiet lately! I hope this is a sign that we're coping better and getting on with life! I thought I'd update you on the steering group's progress. So far, the questionnaire has been finalised and should go live in September. Letters will be sent to various "partners" inviting them to help publicise the questionnaire and maybe stump up some financial support too.
If you want to know more, have a look at www.alopeciaonline.org.uk/hairloss_PSP.asp.
Here's hoping our UK FFA ladies will be able to take part. There's another phone conference tomorrow night. I find them very strange to take part in, but interesting.
Hope you're all enjoying the lovely summer.
Jules x

Comment by Mareea on July 26, 2014 at 7:28pm

Silversurfer, please do not do the recluse thing. Life is really too short. I cut back on socialising and spent too much time agonising over my hairline. I would still like things to be different but that is not going to happen. I am getting it together now and can tell people about FFA. Yes, I resort to a hat, use a scarf and spend time styling but I make myself participate. The rewards are worth more than the embarrassment.

Comment by Debs on July 11, 2014 at 6:39am

I have just collected my treatments from my medical herbalist. I don't know what is in the tincture, it is made specifically for my body and she has not listed ingredients on side. I just tried it for the first time and it reminds me of something I have taken years ago as a child, I can't identify what is in it. The oil I have to massage in I can identify the smell of rosemary I think but I can't break down the smell much more than that.

Since this area of medicine treats you very much as an individual I think we all need slightly different herbs to get a result.

I would say though that there are recipes on the internet for hair rinses and essential oil blends to treat hair loss that may be helpful for some ladies.

If I can get any specific info on ingredients I will of course pass it on.

Comment by Classical Anne in NC mountains on July 9, 2014 at 12:25pm

Hello Ladies, I've been away and am trying to catch up.  So good to hear from my cyber-friends again.

Annie, I hope you have now seen a doctor about those forehead symptoms.  Certainly sounds like a significant allergen reaction, and you need to know what treatment is causing it.  I hope you can clear it up quickly.

SilverSurfer, I'm sorry to hear about your eye troubles.  I'll be sure to have my retinologist check for that as well.  Thanks for the tip.  As for becoming a recluse, please-oh-please grant yourself the relief and contentment of a lovely wig.  I'm more of a GraySurfer, but we're never too old to do what it takes to feel good about ourselves!

Debs, thanks for the detailed report from your herbalist.  You're doing good things in your approach to a healthier lifestyle.  Sadly, there are many things there I cannot add to my system or regime, but I am intrigued by the 'tincture' you'll be getting to help control inflammation throughout your body.  Can you let us know what the ingredients of this tincture are?

Comment by Debs on July 8, 2014 at 2:19pm

Ladies, I just had a very interesting appointment with a medical herbalist, she has a degree in medical herbalism and also wrote a book on healthy eating.

She took a very thorough medical history, also asking about stress, life style, diet, childhood illness/injury etc.. She covered just about everything you can think of to build a picture of "me".

I already use the anti-inflammatory diet. To this she has suggested I ensure my multivitamin/mineral tablet I take contains: ZINC and SELENIUM. I also need to try SILICA too.

I need to add seaweed (european), saurkraut, cayenne pepper, black pepper. The peppers you can sprinkle on food and the black pepper you can add to boiling water.

I have also been advise to try guided meditation, I have in the past few months returned to doing yoga rather than just gym work but I need to find a meditation group.

Where possible I have been advised to eat organic foods. I do eat organically but will make more effort to find it in future.

I return in a couple of days to get a tincture to control the inflammation in my body (FFA and episcleritis) I also am getting a 'wash' to use 3/4 times a week on my hair (shampoo then apply the wash and leave it on) I also will get an oil to rub into my scalp using finger tips to try and help stimulate my remaining hair follicles.

Whilst I know this is not a cure for FFA, it is a holistic approach to control the inflammation in my body and prevent it causing any more medical conditions in the future.

Comment by silversurfer on July 8, 2014 at 1:41pm

Sorry optician

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