Di
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Di's Friends

  • Angela Rose
  • Vesna Devcic
  • Fitzy
  • LeslieAnn Butler
  • Denise
  • Vicktoria (Katya's mom)
  • Angela Jackman
  • Cindy
  • Dee Connelly
  • kastababy
  • rj, Co-founder
  • Cheryl, Co-founder

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Profile Information

Relationship Status:
Single
About Me:
parent of a child with alopecia universalis
Do you have alopecia?
I do not have alopecia
Are you age 18 or older?
Yes

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Comment Wall (12 comments)

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At 1:09am on July 12, 2008, LeslieAnn Butler said…
Hi Di,your daughter is beautiful. I know it's hard on a parent of a child with alopecia. I wrote a book about it, "If Your Hair Falls Out, Keep Dancing!" I just wanted to say hello.
LeslieAnn
At 12:05am on June 30, 2008, Christel Hertz said…
hi Di,

Freedom wigs are produced in New Zealand and these are the same wigs Angelwigs provide. With Freedom wigs, you have to have several fittings, they are made by taking a mold of your head and that mold is send to NZ they produce a plastic cap that has to be fitted and then mostly adjusted. This then is send away again they then make the silicone base and put the hair in this. When that is finished you will come back for the final fitting and cut, so it takes a while from when you first go there and when you get yor wig. Good luck.
Regards Christel
At 10:45pm on June 17, 2008, Christel Hertz said…
Hi Di,

My husband used to live in Gisborne and a lot of years in Macedon. I am from Holland and we met there. When we came back to Oz about 7 years ago we lived in Macedon and Sunbury. We have been to Bendigo several times. It is a beautiful town. For the last 3 years we lived in Paynesville in Gippsland (Vic) But since 8 months we live near Perth WA. We have had a wig for Jennifer from when she started primary. We heard from someone about Angelwigs in St. Kilda and that where we found the most beautiful Freedom hair wigs. The lady who runs it, Angela ,is fantastic really warm and understanding. Jennifer loves her. The wig is fairly expensive but we wouldn't buy anything else. If you are on government benefits you can get over a $1000.- towards it. When we got Jennifers first wig we claimed that benefit. Angela knows more about this. We travelled three hours there and three hours back to see her but it was worth it. At the end of this year I am going to organize another one for Jennifer, so we will fly from W.A. to see her (we can't get them here.) It has given Jennifer the confidence that she needs especially at school. If you would like more info on Angelwigs let me know. Jennifer is using DCP through the hairclinic at the skin and cancer foundation. Prof. Sinclair runs that, he is great. I don't know what you have tried but he is the leader in the field of Alopcia in Victoria if not in Australia and you can see him at the Skin and Cancer foundation in Rathdowne street Carlton. All the best.
At 2:36am on June 16, 2008, Christel Hertz said…
Hi Di,

My name is Christel and my daughter Jennifer is 8 and she has had alopecia since she was 2. We recently went through a hair regrowth but now she has lost it all again. She wears a Freedom wig which is suction based and has real hair. They are absolutely beautiful. How old is your daughter? and where do you live, we live in Perth.
At 8:52pm on April 14, 2008, Vicktoria (Katya's mom) said…
Hi Cassie, I am actually Katya's mom. She is the 12yo. I will ask her if she would like a pen pal. She doesn't really go on this site but I'll show her your page and have her write back. As far as the curls, I can tell you how to style it this way if you'd like, it's not to hard. This wig is actually straight. Also, there are wigs you can get that fit pretty well and should let you participate in sports without issues. ...... Vicktoria (Katya's mom)
At 9:23am on April 14, 2008, Cindy said…
Hi Di, It is nice to meet you..Thank you for the friend request. Your daughter looks beautiful. How old is she? Samantha is probably AU as well and I can't believe it almost a year since we noticed her first spot. I would cry and cry and I still do. But, what gets me is the doctor said she will be fine and it will come back..Well, hello a year later my daughter is wearing a wig and has no lashes or brows now. She is a trooper and has not shed one tear over her hair loss. For her, it is what it is...We are trying a treatment now that will take a while to produce results, but i am getting antsy..How is your daughter doing with all this? Are you doing trying anything? Please send me messages anytime....Cindy
At 11:41am on April 5, 2008, Denise said…
Hi. I am 46 years old and have had a difficult time with this even though I only had 2 spots. I can only imagine how difficult it must be for your 12-year old daughter. I can't really say what worked for me. I tried several things: The derm gave me injections in the spots, and a cream called Aldera. However, it all seemed to be a "let's try this" attitude. I also stopped coloring my hair, even though everybody says that has nothing to do with it. I only applied the Aldera three times, so I can't say for certain that it is the reason for the regrowth. I took the injections every 6 weeks for 9 months. Please, be sure to talk to your doctor about side effects before using anything. I have read postings about horrible "female" side effects from the shots. It just happens that I am past all of that so, at my age, I did not have to worry about those types of side effects. I did gain quite a bit of weight during the steriod injections. Now that I am off the injections, I am trying to address the weight issue. I hope all goes well for your daughter. Just be sure to have open communication with whatever doctor you may chooose and ask lots of questions!
At 10:27pm on April 1, 2008, Angela Jackman said…
HI Di - you haven't mentioned where you are from... I run the Brisbane support group - I have had no hair for 8 years but am trailing a natropath's treatment and now have aLOT of hair... as this is an immune system the earlier he gets to treat people the better his success..... I should put a new photo on my site showing how much hair I now have - these photos of me are about a year old... keep in touch I will up load a new photo very soon...
ANGELA
At 8:29pm on March 30, 2008, Karen said…
Hi Di,

I am from Melbourne and my daughter has alopecia too. Do you live in Melbourne.
At 3:42pm on March 25, 2008, Dee Connelly said…
HI Di,
I have had alopecia universalis since two years old. If you need someone to talk to I am here.
 
 
 

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