Comment

Comment by Sheila Pinder on October 13, 2014 at 5:50pm

Yes, the group is still active. I am not as active since I went totally bald four years ago. I accepted my condition and take no drugs or wear wigs or scarfs. 

Comment by MandaDeuce on October 13, 2014 at 4:13pm

Im here as well!!

Comment by carol on October 13, 2014 at 3:37pm

Yes.  I am still here

Comment by Debs on October 12, 2014 at 7:08am

Is this group still active ?? i never receive responses to my posts.

Comment by Debs on October 8, 2014 at 1:09pm

CARF are holding their 2nd patient support group meeting in London on friday 14 Nov 2014

Comment by Debs on July 13, 2014 at 7:16am

I have been to a medical herbalist in the UK, just outside of London, i have stopped taking all my meds about 5 months ago because the hair loss was continuing and I had side effects, very bad tummy upsets, from the antibiotics. I have a tincture to take 3x a day, herbs to put in boiling water to make up a hair rinse to use after shampooing and an oil to rub into scalp once a day. I wanted to get the inflammation in my body under control because I have now developed an eye complaint that is caused by inflammation too. I still use the anti inflammatory diet and supplements. I feel the way forwards with my health is to use a holistic approach to my health.

Comment by Debs on January 18, 2014 at 11:01pm

I have my tattoo done privately I had no idea that it could be funded by the NHS. I make sure I get my NHS funding for my wigs, this only covers part if the cost but we are entitled to it so I make sure I apply for it.

Comment by Amilda on January 18, 2014 at 6:36pm

 To have my eyebrows tattooed at the hospital would cost me £300.00.

Other's with Alopecia have had them done for free at the same hospital.                    So I feel rather disappointed that I have been refused, maybe it's because  of old age I may be seen as none important. Ah! well!, I shall still stand for my right and be counted.........

Comment by Debs on January 18, 2014 at 2:41am

I have my eyebrows and eyelashes tattooed it was a huge boast to my confidence many of us with FFA and other types of scarring alopecia have this. I would ignore your derm tattooing your eyebrows has no effect on our hair loss so do what you want. There is no medical reason for your derm to say this in fact I was recently at a conference fir people with scarring alopecia and 3 derms attended and tattooing eyebrows was presented as an option for us to use if we lose eyebrow hair.

Comment by Amilda on January 17, 2014 at 8:36am

Hi! Debs,

Happy New Year! everyone.

I did use Betnovate on my scalp for 6 months.Then last year my Dermatologist at the QE. Hospital, advised me to use Dermovate for 6 weeks only- to ease the redness on my scalp- no good- it made me feel ill with headaches.  So I  went back to Betnovate some mornings  and evenings, when I take off my wig to ease the itchiness I use it and especially after a shower, the Betnovate gives me relief but does not stop the scalp redness and itchiness. In February this year, I will see my Dermatologist and see what else is on offer. I do believe though, that the Steroids are not doing my failed Immune system or my health any good.  Also the Dermatologist refuses to allow me to have my eyebrows Tattooed ,[do not have any]  says it's only cosmetic .

Hi! Rosie,

Where can I purchase this - 'Oilatum Shampoo' ?

God Bless you all.

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