diffuse alopecia ?

[lisaG]

Does anybody know much about this.. I lost 70% in 4 days and now the rest is falling out and now round bald spots in the back of my neck...

I did the blood test stuff and nothing comes up. My daughter 2 years ago got Alopecia areata and her hair grew back....I am looking for the best DOC in nyc...please help

[Lisa Huckerby]

Hi Lisa
I just had the same thing happen to me although almost 95 % is gone now. I am in Canada but our system is very slow. I started losing in the beginning of December and my doctor ran the blood work with nothing abnormal. So he has referred me to a Dermatologist but the wait is 4 months Like that helps me. Started seeing a naturopath last week.

Let me know how you have made out if any has come back and what you have done?

Hope to hear from you soon.
Lisa

[orbit]

hello ladies,
I am a young Canadian woman who has had AU most of my life. It began when I was eight. I think that I have tried every "conventional" treatment out there with little sucess. I am very interested in learning if you've had any success with the naturopath? When was a kid I saw one, but was too young to take on the responsibility of my own health and well being. 15 years ago I pretty much just resovled to the fact that I have AU and I will make the best of it. I now have renewed curiosity if there are any recent developments for natural treatments?

I have lived with this for the past 22 years with this and never really minded much. I think that overall I am a better person having dealt with such an unusual affliction. It has never stopped me from doing anything at all. I am strong and confident and really don't care what anyone thinks. I am married, own my own company, have done modelling, and lead a very active and normal lifestyle. Don't let this ruin your day!!!

I do wear wigs - and many of them. I can change my look in a flash, always have beautiful shiny, healthy looking "hair". I usually wear a long striking red wig that always turns heads. Everyone is always commenting on how great my hair is (I just smile and say thank you, it helps make up for the unusual circumstance). No one really knows that I wear wigs, you can find ones that look very natural and are quite comfy. The one thing that bothers me the most - is finding wigs that are small enough for my tiny head. Many wigs are "average" size and have way too much hair in them. I try to look for petite wigs - but they are usually old lady style wigs! Lately I have been partial to the "Raquel Welch" line of wigs. The ones with the mono-tops are the best. They are lightweight and and have many trendy styles.

Lisa(s) if your hair is falling out - my advice is shave your head and get yourself a wig in the colour and style that you've always wanted! Once you've had a chance to fiddle with it and tweak it just the way you like it - hold your head high - and smile!!!! It's really not the end of the world - trust me - I know!

I do have some general questions to anyone out there:

- Does anyone know if OHIP covers wigs for Alopeca Areata/Universalis patients yet? I know they never used to.....

- Has anyone had any natural remedy success stories? If so please tell me about your experience. I am tired of conventional treatments that simply don't work.

To everyone who has AU - my best wishes are with you!!! Please keep us posted if you find anything that works - we all would like to know.

In the meantime, enjoy quick showers , no shaving, the ability to be chameleon like. You will find inner strength that you never knew you had and you WILL be a better person for having dealt with AU.

[orbit]

Heaven, IndyJones
Thanks you saved me a few phone calls and much tele-frustration to find out that OHIP hasn't included us as of yet. (I would have replied sooner, however the notification feature dosen't seem to be working for my email address?!).

I am quite interested in your "top lace" product suggestion. Please let me know how you like it. I would love to see a picture of someone wearing one. As far a wigs go, I purchase them from an Ontario distributor through my business. I do all my own styling, which is minimal.

Sure sometimes wearing a different style (long versus short, red, blonde, brunette etc.) turns some heads, but for the most part I save the different/unusual ones for specific outings. My day to day routine is with the long red hair, and it is a constant so that I don't have to answer a million questions from casual aquntinces (and its none of their business anyway :wink: ). But if I'm heading out of town, going to the theatre, a concert, or am hanging out friends "in the know" I love to switch it up! We really have to make the best of our situation and having a little fun with it lightens the load!

Thanks again, and let me know how you make out with top lace!
Orbit

[Tara]

Hi Orbit and IndiJones

I have Diffused Alopecia Areata, and have done only since December 04. My hair is very thin and patch now, and I am really down about it.

I am thinking I will feel much better if I can get a wig.

I live in the UK, please can you tell me where I should start my search? Also do you recommend human hair, or Synthetic?

Many Thanks for the positive posts

[orbit]

Hi Tara,
I'm sorry to hear that you're feeling down :cry: . As far as wigs go, it really is personal preference. I work for myself and do not have a drug plan that covers any of the costs, so I like the better quality synthetic wigs, as they are usually less expensive than human hair ones. In the past I have purchased expensive human hair wigs, and also had them custom made - however my dollars can work harder in other areas than on the top of my head. Other women would beg to differ and have no problem spending $800- $3000 on a wig - but not me. Some swear by by the human hair ones, saying that they look much better etc. etc. But I think that one can find a lovely synthetic wig that looks just as good.

As I mentioned earlier, I like the Raquel Welch line of wigs. They offer a petite size that fits very well and they don't have too much hair. When you're shopping for one, check out the "crown" or the top portion of the wig. The Raquel wigs have some that are a "monofilament top" (all that is - is an area that is a very thing lacing with hand tied "hairs"). It creates a crown of hair that can be parted in any direction, looks natural, and lets your head breathe. Along the front forehead line is a clear membrane that I find is helpful in preventing it from slipping all over the place. It just naturally "hugs" your bare skin. With these wigs that I am describing the top is the mono style and the back has wefts (essentially rows of machine produced hair that create a net and form the back area of the wig). The wefts are sometimes a bit of a drag. If you like to pull part of you hair up into a barrette (from the sidees and leave the back down) you have to finesse it a little so that you son't see the wefts (or even bare skin through the wefts if you pull it too tight) . All I do is put the barrettes in and then loosen the hair gathers a bit. It looks totally natural then. The other darg about the wefts - sometimes if its super windy, the hair can be blown apart and you can see the wefts - but I just use my common sense, and I'll throw on a cute baret or little hat of and it keeps every thing in place just fine.

Other wigs are hand tied all over. They for sure are "nicer" in the fact that there is no chance of seeing a weft of hair, and are easier to style sometimes - but for me I can't jsutify the extra $. Especially when I wear different ones all the time.

If you're in the UK I'm not sure what salons or stores there are available to you. Obviously you have access to the interent, why don't you start your search there? In addition to that I would suggest checking your business directory for them first. If you do find a store that carries them, go check it out! You'll never know if you like wearing one unless you give it a try. I know some ladies find them uncomfortable, but sometimes its just a matter of finding one that fits you well and is made of quality materials. (Some cheap ones are are really scratchy and not comfy at all). In addition to the wigs there are also "hair systems" available. I don't know much about them yet, as I am just learning about them myself.

And hey - don't be discouraged! I can't tell you how many ill fitting wigs I've had on my head . Ones that look absolutely ridiculous (most often they are just too big with way too much hair) other wigs may have been the wrong colour and made me look like death. I remember the first time I went to try a wig on when I was 8. I cried the whole time, I felt like I looked so silly and that every one would know. Well when I look back on those pictures I realize it didn't look that bad at all!

There's so many things I could share - but I will not bore you with that. If you have any more questions just ask. Also you may want to check out he sister site to this one http://www.heralopecia.com (it was suggested to me and I find it quite inspirational, strictly for women and there's a great circle of strength there). On the website there is a member from the UK It think her name is Sally Turney. She is a wig consultant (her background is in TV and movies) and she offers her services to people liek you and me who have tons of questions and just need some good honest advice - she seems to know whats going on and has pretty good insight - I would maybe recommend speaking to her (although I never have personally spoke to her. Her online contibutions seem genuine and she's not trying to sell you something).

Anyway I hope that helps! Good luck Tara - and take comfort in the fact that you are not alone and this will not ruin your life! You WILL be a better person having lived with this - after all, its ONLY hair
Orbit

[Tara]

Hi Orbit,

Thank you so much for taking the time to write such a detailed response. I am sure it will prove useful.

Take care, and thank you for being so positive.

Tara

[ToupMaster]

sometimes its just a matter of finding one that fits you well and is made of quality materials. (Some cheap ones are are really scratchy and not comfy at all). In addition to the wigs there are also "hair systems" available. I don't know much about them yet, as I am just learning about them myself.

You WILL be a better person having lived with this - after all, its ONLY hair
Orbit

Fit and comfort go hand in hand... cheaper units are often meant to be worn by those that have some hair.. which protects them from the scratch base's. You need something with a smooth feeling interior and a comfortable allover fit... not tight, not loose.

As for wig verses Hair Replacement.... Hair Replacement is just a fancier marketing word used to get a few more dollars out of you and make you feel good about paying it.

[mcserkanp]

yes this is a trial çııÖÖçşTwice weekly 5 mg dexamethasone oral pulse in the treatment of extensive alopecia areata.

Sharma VK, Gupta S.

Department of Dermatology, Venereology and Leprology, Postgraduate Institute of Medical Education and Research, India.

Thirty patients (20 males, 10 females) with widespread alopecia areata (25 extensive alopecia areata, 5 alopecia areata) for a mean period of 4.2 years were included in the study. All patients above 12 years were administered 5 mg dexamethasone oral pulse on two consecutive days every week. Three children (< 12 years) received 2.5 mg to 3.5 mg dexamethasone oral biweekly pulse. Patients who had received treatment for a minimum period of 12 weeks were evaluated for terminal hair growth. Complete to excellent (75-95%) hair growth was observed in 16 (63.3%) patients. Growth was good (50-74%) in 2 cases and poor (< 50%) in 3 (10%) cases. Six (20%) patients has no growth of terminal hair. Complete to excellent growth of hair was obtained after a mean period of 5.35 months (range 3-10 months). Relapse occurred in one case each after three and six months but hair regrew with re-treatment. Side effects of corticosteriods were frequent, seen in 8 (26.6%) patients, but were mild. In only one case, treatment had to be discontinued. We propose that twice weekly 5 mg dexamethasone oral pulse for six months may be considered as one of the modalities in the treatment of extensive long standing alopecia areata.
and i know one alopecia universalis used this in turkey and he has full regrowth and not any relaps for 5 years now im trying