Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 167
Latest Activity: on Wednesday

Discussion Forum

Are you contemplating eyebrow tattoos?

Started by Anne Louise. Last reply by Anne Louise on Tuesday. 56 Replies

I am here to say I strongly recommend getting it done! It is worth every penny. I had mine done yesterday and I can't believe the difference in my life. For a year I had been carting around eyebrow pencils, always worrying about smudging throughout…Continue

To wash or not to wash?

Started by jennyl. Last reply by Mareea Jul 25. 10 Replies

  I am wondering if anyone has any advice about the effects of frequent washing on the rate of hair loss.  I am a teacher, so while I'm off for the summer (and just receiving diagnosis a month ago) I have been avoiding the everyday shampoo which is…Continue

For ladies not using any medication - drug free management of FFA

Started by Debs. Last reply by Debs Jul 11. 29 Replies

This discussion is for ladies that have stopped using medication or have decided not to use medication.I used drugs for one year. Now using holistic strategies of anti inflammatory diet (see Dr Andrew Weil's website) and supplements; turmeric,…Continue

New to you!

Started by Mareea. Last reply by Classical Anne in NC mountains Jun 27. 8 Replies

I am pleased to have found this site as the discussion has reassured me about treatment questions and the possibility of coping with this disease. Isn't that the most apt word  DIS Ease. I rarely feel at ease these days. I recognise the similarities…Continue

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Comment by Jules UK on Wednesday
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
Comment by silversurfer on July 8, 2014 at 1:40pm
I have just been told by the tocian I have blepharotis small cysts on the eyelid . The dermatologist also said I have small cysts on my nose my FFA is now about 5 cm back from my hairline and has disappeared from behind my ears. Is it any wonder I am becoming a recluse
Comment by Annie on July 8, 2014 at 1:22pm

Hi all, I'm just wondering if anyone has had the symptoms I'm experiencing now.  My forehead is tender and feels tight.  I also have mild swelling from my hairline to my eyebrows. 

Comment by April on July 8, 2014 at 8:09am
Debs, this is interesting. It seems most of us on here have other health issues and autoimmune diseases. I am also trying to get an appointment with a naturopathic MD to get her opinion on all of this. Definitely let us know what your herbalist says. On another note, just wondering if anyone has any experience with FFA and pregnancy? My husband and I would like to start trying to conceive. I am somewhat nervous about how this will affect my hair loss. It got worse after I had my first child. I know I am losing hair but I've managed to hang on to my eyebrows until this point. Hard not to worry, but trying not to!
Comment by Debs on July 6, 2014 at 1:50pm
I have been diagnosed with episcleritis (an eye condition) it is not a serious medical condtion and my GP referred me to my local eye clinic. The consultant said it is caused by "inflammation in the body and it is not known what causes it"... Sounnds familair ladies! I have steroid eye drops and some froben tablets to reduce inflammarion.

I do follow the anti inflammatory diet however the past couple of months have been extremely stressful in my department at work and I have not followed the diet as strictly as I usually do plus the stress may well have contributed to this eye problem.

I am going to consult a medical herbalist, I went to one of her raw food diets back in February and she is really up to speed on diet to cure/ help health.

Once I have my consultation I will share whatever she tells me with you. I want to ask her to help my control my current inflammation in my body and prevent future medical problems caused by inflammation.
 

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