Alopecia Ireland. Anyone have contact details?

Archeron

http://homepage.eircom.net/~alopeciaireland/pages/about.htm

Hi guys,

Sorry if wrong forum, wasnt sure where to post this.

A friend of mine is trying to get in touch with Alopecia Ireland as the above website, but the mails are bouncing back and the contact number is going unanswered. Would anyone by any slim chance know of any other way of contacting this organization?

Thanks a mil

Pinki

Hi, unfortunately I don't have a contact for Alopecia Ireland but I do have alopecia. I have been suffering about 10 months now. I spent a fortune on lots of different types of treatment available. I went to the Universal Clinic on Dame Lane, Dublin 2 for treatment which involves using a laser light to encourage growth and electric signals into the head and massage to get blood circulating, I bought all kinds of lotions and potions from them but it didn't work and I think it is a joke, preying on venurable people. I took 'Head High' vitimans from the chemist, I went to the Chinese Herbal shops and got tablets called Yang Xue Sheng Fa and also a lotion that you rub into your head twice daily these also did not work. I also done a course of Yoga which didn't work either. I read on the net that it can be linked to food intolerance and allergies and so had all the tests done and have no intolerance or allergies.
I finally came to realise that these people and making hard cash from venurable people and in my doctors own words he would "sue the asses" off them all if he had the time and money.
The best way to deal with it is to get a good wig (Rene of Paris Amore are fab wigs, I order then from America and they are SO cheap, they are synthetic hair but you get a good 6 months or so out of them, really natural looking and then scalp part is perfect, no-one ever looks twice at you, they'd never know) build up your confidece, try not to worry about things, eat well (plenty of veg, fish etc),and exercise.
I had finally come around to this way of thinking and getting used to living with alopecia and accepting that there is no magic cure and your hair will grow back in its own time... and then I bought a Vibro Plate (Crazy Fit). Maybe its a coincidence or combination of both but I had only been using the vibro machine for 1 week and LOW AND BEHOLD my hair is starting to grow back!!!!!
I have since found out that these machines were invented by Nasa to keep astronauts fitness levels up when they spend a long time in space. They are used by physiotherapists and even part on Man Utd's fitness regieme. They help you lose weight, tone up, increase bone density, get rid of cellulite, increase Metabolism, great for arthritis and BLOOD CIRCULATION etc

When I think about it all the massage's and some of the tablets I was taking were all about getting the blood circulating.

As I said before I would hate to give anyone false hope and I have had my hopes dashed many a time with various treatments over the last 10 months and I don't know if it was just my time for my hair to grow back or if the vibroplate helped but I have been waiting for 10 months for my hair to return and soon as I started using this machine it happened. Its worth a shot for any sufferers out there. If you don't want to buy a machine you can rent them in Chartbusters, its about €4 for 10 mins. You can also rent one for your house for a few weeks. To buy - the price of them as come down an awful lot but your best buying from England or the North - much cheaper. I got mine 2nd hand on Gumtree.

I hope this is of help, although I didn't answer your question!

If anyone would like to speak with me just private mail me. I always said I would have loved to speak with someone going through the same thing but never got to.

Also if anyone tries this out please let me know how you got on

wild_swan

if your on facebook they're there - add Alopecia Ireland Liz Shiel as a friend

purple123

Hi Pinki,

My husband had alopecia for maybe 2 yrs now he got 1 patch on the back of his head and this grew back delighted then 2 more patches came and a lot of his beard hair is gone. Our doctor said that their is nothing he can do no cure. He uses rogaine, not doing anything yet for him and he is taking a multi vitamin. He gets a lots of slagging from his so called friends i really feel sorry for him but he says he doesnt care. I have looked up everything about it on the net. Done online questionaires with different clinics one in england wanted 700 pounds sterling for 1 years treatment. I would pay anything to get him right but i think you are right they are out to get your money. We should listen to our doctor and not throw away our money. I rang Blackrock to ask about the problem and it 200 to see a dermatologist this is probably another wast of money. His brother has that machine you are on about might give it a go no harm in trying it and its free

Pinki

Hi Purple,
Definately give the machine a try. As I said I don't know for definate if thats what made my hair grow back but everyone seems to think it is. It happened soon as I started using the machine and it is coming on great, I started to lose my hair about 10 months ago and this is the first time anything has grown back at all. Its all about blood circulation, the machine is supposed to get the circulation going and where I had treatment done they used a lot of massage to get the blood circulating and I was on tablets from the Chinese Herbalist place to do the same thing. (Plus, it really tones you up and makes you feel great which is an added bonus :-)
I would be very careful about blowing money on treatments, my doctor told me that one day there will be a cure but right now there is no cure because they do not know the exact reason it is caused so therefore cannot cure it! It makes sense!!!!
As for mates slagging your husband, it awful, but boys will be boys!!!! I do not even try to understand them!!!
I suppose I was lucky in a way that my hair only went from my head so I covered up with a fab wig. I would be so devestated if it went again after growing back but as my doctor says, I have more chance of it coming back than of someone who has never had it before getting it - as with any illness.
Anyway I'd love to hear how your husband gets on if he tries the machine out!! Best of Luck to him!:)

Hi guys, I have alopecia too. Alopecia Ireland has a new homepage, it's at http://http://alopeciasupport.webs.com/

Also as another poster suggested, you can find Alopecia Ireland Liz Shiel on Facebook.

Just curious Pinki, what form of alopecia were you diagnosed with?
I was never actually diagnosed. My doctor did blood tests, they all came back normal, and asked me if I liked wearing hats. Needless to say I was mad as hell. I just grew to assume it's androgenetic alopecia. I can't afford to try anything to treat it, and from what I heard it's pretty pointless trying to treat any form with diffuse hair loss. So yeah, I got used to wearing hats

Where do you get your wigs from? I had a nice one last year, but I wore it to death and it was ruined, and finding it hard to afford a new one now!

Pinki

Hi Budgese,

I was diagnosed with Alopecia Areata. Its patchy hairloss, I lost about 75% of mine. I had all the blood tests done too with the exact same results - nothing!! Although it actually seems to be quite a common enough problem doctors don't seem to know much about it, I got some similar comment from the first doctor I went to. Don't worry about not having money to waste on treatment because thats all you'd be doing - wasting it!!

www.fekewigs.com Have a look at thier site, the Rene of Paris Amore wigs are what I get (The Miranda), they always have sales on and work out about 160 euro including postage. They come from America but are a hell of a lot cheaper than buying them here. You get a good 6 or 8 months from them - try not to wash it too often, maybe every 2 or so weeks and use serum daily so it won't look dry. Theres a great guy in a salon called Snips in Abbey Street in Dublin, can't think of his name offhand, but he "de-frizzes" wigs, only charges 20 euro and takes a few minutes. You don't even have to take it off, he cuts it a bit shorter and gets all the frizz off and it gives a new lease of life to it. Like going to the hairdressers - only less expensive!!
I now have my new wig and my old one I have for knocking around the house or going to the gym so my good one stays good!!

Thanks Pinki!

I've become very well familiar with alopecia, the forms and causes, in what became self research since doctors don't seem to give much of a toss. I suppose if it's not life threatening, and let's face it, almost untreatable, they can't be expected to help a lot.

Unfortunately those wigs would be out of my budget right now. I saw another site called contrast wigs uk that was very affordable. Though at the moment I'm in rebellion with my increasingly thinning hair (it is very thin, and not going to get any better, but...) I just hated wearing stuff on my head, especially wigs, so I just stick a bandana on, or use stuff called Dermmatch which is like Couvre and you know, if people notice, I don't care. (Ok, I do - but I make the decision to go wigless, so I have to accept that some people will be arseholes about it, but the majority aren't).

Great to have some fellow alopecians to chat with. I've been in touch with Liz Shiel about setting up a more regular alopecia support group in the Dublin area, meeting in the city centre to be more accessible.

Pinki

Hi Budgese,

I think you are really brave to go wigless - more power to you!!!! Only wish I could be so brave!!
And if anyone makes a comment they are actually making a show of themselves and showing what kind of person they really are!! Let face it, if someone was missing an arm or finger would they say anything... I bet though most people will be really supportive!

A Dublin support group would be fantastic! Because as you know there is not much out there and it seems that alopecia affects a lot more people than you would think! I would have have loved to have someone to speak to when I started suffering. Its a fantastic thing you are doing!

Best of Luck x

up for anything

My son was diagnosed with alopecia areata when he was 7. It was a couple of months before his first communion. On the advice of a relative I took him to I took him to a nutritionist in Dublin at the Holistic Healing Centre in Dame St. and he put him on a number of supplements (A, B, Calcium and Halibut Liver oil capsules). His hair started growing back in again after a couple of months. His GP said it might have anyway but I put it down to the nutritionist. He hasn't had another hair loss episode since then, touch wood.

LegacyUser

I have alopecia areta for the last 3 years now, it's thinning all over but especially on the top of my head. I wore a hairpiece (wig that you clip onto existing hair) for a while and loved it but felt the hairloss was getting worse from wearing it. I was also going to the Universal Hair and Scalp Clinic at the time (treatment didn't work for me either) and they advised against wearing it for long periods as it was over heating my scalp and not allowing enough oxygen through etc. Anyway I havn't worn the hairpiece for a few months now, I've been using Mane hair thinkening spray instead (great stuff) and I think my hair has gotten some bit better. I have a new GP now too and he has put me on Dianette (when I first got alopecia my hormones were all over the place according to the blood tests so i went on yasmin but this didn't really help), and he told me to take manuka honey twice a day, eat red meat twice a week and drink pineapple juice. Anyway I'll give it a shot, as it was either that or try one of the expensive treatments again.

I really think it would be great if there was an alopecia support group in Dublin, it would be great to talk to others going through the same thing.

Hi guys! Alopecia Ireland had a support meeting in the Red Cow hotel on Wednesday night. I went along, they're a great group and it was a great meeting. A few of us talked about getting a more social group together to meet regularly in Dublin, a more informal meeting. I'll keep you updated if we get anything planned!

Midnight Sky

Hi all,

In the last few months I seem to have developed Alopecia. I have a patch on my beard on my chin and a larger patch on the left side of my head. I have been reading up and it does seem like nothing really works to cure this condition. However I am going to make an appointment to see a doc and ask for blood work etc to be done in case there is something else underlying causing problems. I haven't been to a doctor in many many years and was wondering if anyone has any recommendations in the Dublin city area? I would like to go to a doc who has experience with this problem and I am not interested in specialist "clinics" as it looks like they have not bore fruit (or in this case hair) for other suffers who have attending them and parted with large amounts of money.

So if you know of any Doctor you would recommend please post or PM.

Thanks in advance.

buckfasterer

Hi folks,

Just to add my bit in here........i have alopecia universalis.....not a hair on me this last 3 years, i was 22 when i shaved my hair and havent touched it since! It put me back a lot, the worst is when people you know and grew up with walk past you on the street and dont even know you. To say your confidence takes a battering is an understatement! If anyone else on here has the same sympoms or has it and wants to talk or anythin give me a pm sure, im more than glad to lend an ear or advice if i can!

Liz Shiel Alopecia Support Ireland

Hi there this is Liz Shiel from alopecia Support Ireland.
Our next support group is in January but i would love to have a chat with you. It sounds like you have been through so much. If you could email me your number I will give you a ring. My email is alopeciasupport@gmail.com for any questions or queries I will be glad to answer or call anyone no problem. Please also check out our website www.alopeciasupport.webs.com, look forward to hearing from you,
love Liz Shiel - Alopecia Support Ireland

Ola Lola wrote: »

I have alopecia areta for the last 3 years now, it's thinning all over but especially on the top of my head. I wore a hairpiece (wig that you clip onto existing hair) for a while and loved it but felt the hairloss was getting worse from wearing it. I was also going to the Universal Hair and Scalp Clinic at the time (treatment didn't work for me either) and they advised against wearing it for long periods as it was over heating my scalp and not allowing enough oxygen through etc. Anyway I havn't worn the hairpiece for a few months now, I've been using Mane hair thinkening spray instead (great stuff) and I think my hair has gotten some bit better. I have a new GP now too and he has put me on Dianette (when I first got alopecia my hormones were all over the place according to the blood tests so i went on yasmin but this didn't really help), and he told me to take manuka honey twice a day, eat red meat twice a week and drink pineapple juice. Anyway I'll give it a shot, as it was either that or try one of the expensive treatments again.

I really think it would be great if there was an alopecia support group in Dublin, it would be great to talk to others going through the same thing.

Liz Shiel Alopecia Support Ireland

Liz Shiel Alopecia Support Ireland wrote: »

Hi there this is Liz Shiel from alopecia Support Ireland.

Good woman Liz! This is Dee! Have you and Simon fixed the website yet.

Not to drag the topic too far off course either - will be looking into getting together a social alopecia group in Dublin hopefully before Christmas - if anyone is interested send me a PM

tbh

Liz Shiel Alopecia Support Ireland wrote: »

Hi there this is Liz Shiel from alopecia Support Ireland.

Hi Liz,

I'm happy to let you pass along details of your website, but one post per thread is enough, I think. You can also post your website details in the "resources" thread if you want.
Please note, you are not allowed to post your phone number anywhere on boards.

If you want to be a part of our community, we'd love you to be, but you need to be aware of the rules and follow them, as they are for everyones benefit. If you're unsure about anything, drop me a message and I'd be happy to help.

thanks,
tbh.

Liz Shiel Alopecia Support Ireland

Hi sorry about that it wont happen again, silly me.
Can't find resources to add my website please can you help,
Thanks
Liz Shiel

tbh

Liz Shiel Alopecia Support Ireland wrote: »

Hi sorry about that it wont happen again, silly me.
Can't find resources to add my website please can you help,
Thanks
Liz Shiel

no problem Resources thread is here

Amhran Nua

Midnight Sky wrote: »

So if you know of any Doctor you would recommend please post or PM.

I think the appropriate specialist is a trichologist, you can find one at trichologist.ie.

emmms1234

Hi All

Im new to this thread but sought it out as have been diagnosed with alopecia areata about 2 months ago. Initially i noticed 2 very small bald patches but hair was falling out in lumps. Went to Dr and then to Dermatologist and have been using lotion and Rogiane as per Dermatologist. Dont think it working and hair getting very thin. Thinking of getting a wig as very subconcious of it now. Has anyone heard of Hairspray in Donnybrook and is it any good?

Midnight Sky

Hi emmms1234.

Firstly sorry to hear you have alopecia areata. I have had and still have it to some extent also but think I have a good grasp on treating it. I am in the process of setting up a site that deals with the subject of Alopecia Areata. It is surprising just how many people have it or have had it.

One thing I would ask you to do is please do not try every lotion and potion on the market. People will always take your money - but if there was a sure cure for alopecia areata everybody would know about it already. There is nothing you can put on your head that will cure alopecia areata. You would be better trying to take good care of your overall health and well being - particularly being mindful of your digestion and how you feel when you eat and after you eat. This next sentence is extremely important. When we are stressed we tend to eat badly and now more than ever you need to take extra care of you diet and health.

You need to fix your body from the inside out and not from the outside in if you know what I mean.

On the wig front hopefully someone else will reply back with some advice. Alopecia will run its course differently with everybody and it may take a few months or even 18 months or more for you hair to regrow properly but please don't be conned by companies offering lotions and potions. I am confident this condition can be reversed for everyone.

Do the best good you can of looking after yourself - good diet and exercise - good for your head and health anyway!

I will update this thread when I get the site up and running.

emmms1234

Hi

Thanks for the reply. Things have moved on now and I got the wig as very little hair left. took your advice and decided to ditch all the alternative therapies. Did go to a holisitc lady and she went through all my life with me and in discussion i found that surprisingly so much has happened!!! well who hasn't had **** happened to?? Came away thinking maybe i should be seeing a psychiatrist but then when calmed down realized what person out there has not had **** happen. My life is not worse or better than the next. Well in fact it is probably better than most and that is not boasting but just trying to put it all in perspective. So on the bad side - my parents split when i was 14, both parents roaring alcos, i was a midlde child so had a big sis who took care of me. On the good side - that was years ago- I now have a very successful business, very close to my bro and sis whom i love, have two wonderful boys ( love them soooo much) and a wonderful partner, so why my hair falling out now?????? Been back to my dermatologist n she says all fine and hair growth showing so should all grow back which is good. It just doesnt seem right that all you hair cab fall out n then grown back and there is now reason snd no treatment. Mine nhasnt grown back yet but i can see sprouts bot maybe thats the regaine. i dont know if that permament or only temporary. Initially I was so freaked cos I was frightened that I was a goner but now and since i got the wig I dont really care about the "hair" but want to know what caused this. Hair on head growing back bout noticed bald patches on arms and also pubic region. no too bothered about thaqt but does that mean that all every where is going to fall??? I am obviously swaying from not caring about hair to caring about it but i just want it to stop.When does ot stop?