Comment

Comment by Jules UK on August 12, 2014 at 9:27am

Hi CJ, Dr Farrant is a member of the steering group that I'm part of so he ought to know a lot about alopecia! You'll find from Debs' fact sheet that there,a a variety of treatments, none with proven effectiveness. The advice from Drs is always that you choose what you want to try. Difficult decisions. I'm seeing a new derm on Thurs, recommended by Dr Harries, at Solihull. So no more travelling to Salford.
CJ, I'm sorry you've got this but echo comments made by others. You will eventually reach a Point where you no longer dwell on it quite so much. To start with, though, it's hard. X

Comment by CJ on August 12, 2014 at 5:48am

Thanks for replying all. The doctor I am looking at seeing is Dr Paul Farrant. Has anyone heard of him? I can't get to Salford easily to see Dr Harries - if he even does private? Thanks Debs. Still trying to figure out the site so not found messages yet.

Comment by Celia on August 12, 2014 at 5:07am

Hello ladies.  I am due to see a new derm recommended by Dr Harries as I asked him to refer me to someone closer to home.  The name is Dr Iaisha Ali a female derm at Charing Cross - I see her in October.  Pam, your hairpiece did look good and I would not have known you were wearing one.  I know that Jules now wears one with success too.  Haven't quite got there yet.

Welcome CJ - whereabouts are you ?  Perhaps we ladies with close M25 access would like to get together again before the end of the summer ?

XX

Comment by Debs on August 12, 2014 at 5:02am

CJ I have sent you a message but if you do not pick it up please email me and I will send you a fact sheet I have typed up to bet yourself up to speed.

Comment by Pam on August 12, 2014 at 4:00am

I do agree with the comments made by Meme. My FFA has been with me for some years, and at the end of the day you just have to come to terms with it, and not let it ruin your life too much!

I have been extremely pleased with my hairpiece, as it has done what I wanted ie make me look a lot better and give me back my confidence!

However, there are some obvious limitations as well, for instance, I couldn`t leap into the surf this summer like I usually have in the past! I can swim in the sea, but too much surfing in strong waves could just be a bit too much.

But hey ho, my friend can`t surf any longer either as she has had ear surgery which has gone wrong, and left her deaf in one ear, and sea water could cause further damage.

So we all have to cope with some issues in life, and the one I have been handed out is FFA. I hate it, but I won`t let it wreck everything for me!

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

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