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Comment by Liz on November 11, 2014 at 5:16am

Hi

I had a phone call regarding the CARF meeting in London next week. Apparently there has been very few people singing up to go along. I am unable to due to work. Is anyone else going? Can anyone else go? xx

Comment by Sas Holland on November 10, 2014 at 11:26am

Thanks very much, Anne Louise for uploading this Carf document, very usefull for new members like myself!

Comment by Anne Louise on November 10, 2014 at 10:25am

Since there are new members here I thought I'd post a link to the most recent CARF (Cicatricial Alopecia Research Foundation) newsletter. This organization is a great resource for information and support groups.

http://www.carfintl.org/_docs/newsletters/CARF_Newsletter17_Nov2014...

Comment by jess on November 4, 2014 at 4:14pm

I am also excited about it. Please let us know what treatment she provides you with.

Comment by Pam on November 4, 2014 at 4:09pm

Really interesting to hear about your consultation with Dr Ali, it sounds very promising. I would be very interested to hear about the treatment plan she proposes too. 

Comment by Catherine on November 4, 2014 at 10:08am

Thank you so much C for the update. Dr. Ali sounds great! Did you need a referral from your GP to see her? Did you call the Charing Cross hospital dermatology department to make an appointment?

Thanks again! Catherine x

Comment by Celia on November 4, 2014 at 9:45am

Dr Iaisha Ali is the derm's full name and she leads the clinical team.  So very approachable and knowledgeable.

Comment by Celia on November 4, 2014 at 9:43am

Hello all.  I have just returned from Charing X hosp where I saw Dr Ali,(Consultant Dermatologist) a very pleasant young lady who has expertise in alopecia.  She took 3 new biopsies one from the front, the crown and the back, the aim being to see what if any differenced there is in any alopecia activity - I go back in 2 weeks time for the results and then she will start me on a more 'tailored' regime. I had some blood taken too for the full screening inc. hormone levels - never been offered that before. I don't like meds but she has convinced me that she will try to make a plan that may just halt the FFA - she has had patients for whom the FFA has become inactive after some 18 months of treatment.  She had not seen such an effect as I have following steroid injections - as I've said in the past I have a 'trench' at my hairline because of these shots - never again - but I know there are ladies who have felt these to be successful.  Fingers are crossed once again, not having been seen by a derm for a year.  Charing Cross hosp was amazingly clean and the staff were soooo efficient - all ran like clockwork, my apt was about 15 mins late but I had a 50 min consultation. 

Comment by Debs on November 4, 2014 at 3:05am

Deborah please email me for a fact sheet to get yourself up to speed with FFA. The questions you are asking have been answered by our derms. Contact me on debs-007@tiscali.co.uk

Comment by Deborahhartshorn on November 3, 2014 at 12:26pm

Hello All

In the last couple of weeks I've been diagnosed with FFA, however I've probably had this condition for the last 3 years, for example my eyebrow hair fell out first followed by a red sore patch appearing on my forehead which spread down the side of my hair line, resulting in my hair receding around the front and sides.  The specialist I saw injected my scalp with steroids and I’m to re-visit him again in January.  I wasn’t expecting the diagnosis I got, as you can imagine I was thinking I’ll go along to see the specialist, he’ll tell me I’ve got a skin condition give me some cream and my hair will be back in a few months, when he didn’t I was shocked and upset and didn’t really ask the questions I wanted to, all I could remember from the consultation was the words “It’s a rare condition and your hair will not grow back and the aim is now to slow or prevent any further hair loss”.  I’m 47 and not yet showing any signs of the menopause and except for low Iron which is currently being restored with Ferrous Sulphate tablets all other blood test results came out fine, therefore I am at a loss as to how I’ve developed this condition.  I don’t have a perfect diet but I don’t eat junk food either.  Is it really true that FFA sufferers will never get back the hair they have lost?  I’m open to any advice that will inject some hope to get me started on how to tackle this condition.  Thank you for reading and your advice in advance.

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