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bg1984 
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Joined: 29/July/2012
Location: Hong Kong
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 Topic: Hi, I m new - Advice please!
Posted: 29/July/2012 at 2:11pm |
Hi all
I was diagnosed less than 4 weeks ago with Alopecia areata....since the diagnosis my hair has fallen out at an extreme rate (almost another 30%). I m still in shock this is happening so fast - i just thought my hair was dry and in bad condition! Normal daily routines such as washing my hair and brushing my hair are now traumatizing and every day is an emotional roller coaster. I m only 27 years old but a UK expat living and working in Hong Kong so I am not surrounded by my family and I m really scared. I ve been very open about my condition to my friends here and I couldn't ask for any better support. I am preparing myself for the worse as the hair loss rate is now uncontrollable, also living in such a humid country i feel it is speeding up the loss.
I ve been to the doctor, had about four blood tests to rule out any diseases and she referred me to a dermatologist - i ve only had two sessions with her since the initial diagnosis and she gave me a scalp application called Betnovate (is this recommended?) which she told me is a steroid in liquid form. I need to apply this twice a day to my scalp - i go back on Tuesday for another consultation (its been two weeks since I last saw her) to look at regrowth...so fingers crossed. She also advised me to wash my hair with baby shampoo - is this normal? I have also alternative treatments (my decision - not the docs) - i have started acupuncture and starting seeing a chinese doctor for chinese herbal medicine - i am getting desperate. Can anyone recommend any other treatments or therapies? I am coming back to London in three weeks to see my family - can anyone recommend any treatment centers which specialize in this condition? I m sure my doctor is doing everything she can to help but I want to cover all bases and perhaps have a second opinion.
Any advice would be much appreciated - as far as I am aware, there isn't any forums or support groups out here which I can rely on.
Thank you for your time.
Bryony
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BeeJay
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Joined: 07/June/2006
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Posted: 29/July/2012 at 3:21pm |
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Hi Bryony welcome
First of all DON'T use baby shampoo. It's a complete myth that it is gentle - actually the reverse, one of the most astringent shampoos you can buy. It will strip your scalp of natural oils - its made to cope with baby conditions. Not personal opinion, advised to me by multiple dermatologists and pharmacists. Shampoo doesn't affect your hair loss because the problem is internal, not with the hair you see, at all. Use whatever product from whatever price range which you enjoy.
Alas there is no magic cure - seeking out products to try is something we all do to an extent - but there is nothing from any source, inc medicine, which has a guaranteed answer. Treatment centres, go if you so wish of course, but they can't provide any better options than your doctor - you may well pay way over the odds too for the same. Read around here for info on legit treatments and the hocus pocus.
It's important to remember, patches do not automatically turn into total loss - this is not necessarily a forever condition - and the condition has the ability to right itself, without any intervention of any kind.
Whatever happens the forum can help you through. It's a tough journey, lots of high emotion - we all experience it, you are no longer on your own with this, so do keep in touch.
Take care
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BJ
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Angelindisguise
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Joined: 21/July/2012
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Posted: 29/July/2012 at 4:03pm |
Welcome Bryony,
Keep us updated so we could help you out. We are always here to support you in your journey. Better to stick to one prior to shifting to other medication so see a slight progress in your treatment.
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bg1984
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Posted: 09/August/2012 at 6:15am |
Thanks both for your support. Its been a tough few weeks but getting through it slowly. Had dermojet the other day - not as bad as I thought! Have found an amazing hairdresser who makes real hair wigs, have been for a consultation and will decide soon when to order something. Have also met someone else in HK who has alopecia, so the support is out here! Good luck to you all and thanks again for the advice.
B
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bg1984
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Posted: 30/August/2012 at 6:05pm |
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Sadly got only about 20% of my hair left now... I didn't realize it was going to happen this quickly (2 months !!). Luckily I have a lot of baby hair growth, so really chuffed. Giving it another couple of weeks before I zap of the rest of what I have - its so measly i'd rather get rid of it. Getting head measured for wig tomorrow :) - whoop can't wait!! xx
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hksm
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Posted: 06/December/2012 at 2:47pm |
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hi Newbie
I thought i'd contact you as I'm also from UK but live in HK and suffer from alopecia
I am so down, and quite scared about it. Didn't get a lot of reassurance from the doc I went to see. Am going to get my full body check to see if it's any disease etc. Also just found out that my husband has cheated on me, got someone pregnant, and she's keeping the baby. I don't have anyone I can talk to other than one friend who is about to have a baby in 3 weeks, and I don't want to burden her at the moment as she's under doctor's for home rest for possible birth complications.
If you can, would you let me know about the wig guy you found, and if you're happy with it please? If possible, how much it cost too.
Really struggling with self esteem at the mo, and the wig, after the body checks, would give me some comfort.
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tania
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Joined: 09/December/2006
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Posted: 07/December/2012 at 3:57pm |
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Hey Hksm,
Big big hugs to you.You aren't alone. A ton of us have been what you going thru in terms of hair loss. And its terrible when you can't really tell people about it. And in my experiences with doctors all they said to me was there was no cure. And alopecia really does take your self esteem away. But you know something you are beautiful no matter what! And even with hair loss once you experiment with options you will have more trouble picking what to wear LOL... whether it be the short wigs one day or blonde wigs the next day.or hats or even scarves... You can go thru a whole wardrobe of wigs! within 1 days A hairy person it would take much longer.and China is the central wig industry And many companies buy wigs and hair from China.I will send you a message in abit. And Kick that man's backside!!! with the highest heels in that wardrobe of yours!Ps to Bg1984 there is alot of support groups in the uk and even in the london area and other countries. And will send you a message tooo.Though in asia we are more hush hush. There is only support group in hong kong that I know of but its for kids and its called the Children's alopecia project (CAP)
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tania
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Posted: 07/December/2012 at 4:41pm |
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Ps I think you both should go out for wig shopping together!! it always helps to have a friend beside you!wink wink tata for now beautifuls!
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BeeJay
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Posted: 07/December/2012 at 6:28pm |
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Hi Hksm
Welcome to the forum.
Doctors are in a difficult position, they simply cant give us the answers we want, because they don't have them.
I don't believe you've said which form of alopecia you have... but depending on that, yes it is possible for it to recover, and yes it can do this without any help from any direction.
You may hear doctors refer to alopecia as incurable, it's not quite like that. There are treatments out there, but.... one may work for you, or none. What may help you, won't help me. This is more what they mean, that they do not have one treatment which all of us can take and be fixed. It really is a matter f try and see, if you want to.
Alopecia is usually diagnosed because its NOT any other condition. There isn't a test for it, but gets diagnosed by ruling out other possibilities. The vast majority of us here come back with normal blood results etc. The reason why we get alopecia is the big answer we all want to know, but unfortunately that is still under investigation.
We all travel the emotional journey, so here we will get exactly how you feel. There is much comfort to be found via the forum.
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BJ
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SunshineJ
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Posted: 08/December/2012 at 12:24am |
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just returned from my Dermatologist's office. He gave me cortisone shots(not sure if its a preferred treatment option in UK for most alopecia patients as it is in US)
after countless hours of research i do not believe it will work, but whatta heck let's wait and see.
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