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Does Anyone Have Vitiligo, Morphea And Scleroderma?


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6 replies to this topic

#1 maia

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Posted 14 February 2007 - 07:10 PM

my 29 year old daughter [a loving mom of 2 small children] does, and all seem to be getting worse... in addition, she has some kind of thyroid problem, yet another autoimmune-related disorder...

if anyone knows of any similar cases, PLEASE email me... I'm in despair that this beautiful girl who was a talented ballerina for most of her life is now facing both disfigurement and being crippled in the not far off future, if no cure can be found...

she is also a 'DES Daughter' and I have no idea if that would be connected in any way, but it seems the vitiligo may have been... any thoughts?

if anyone is up on who are the leading doctors and researchers in this field, please let me know...



love and hugs, maia

#2 Heidi

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Posted 15 February 2007 - 02:48 AM

Hi Maia,

Welcome to the forums! I am glad you have found us but so sorry it is because of your daughter's illnesses. I don't know how much you have read about Vitiligo or morphea, but I am going to give you some links to information on our Sclero A to Z web page that has GREAT information. Here is the link to Vitiligo
You will find information here about treatment and personal stories (stories of from other individuals who have had this condition). Here is the link to information about Morphea. Here you will find all kinds of great information and more personal patient stories.

I hope you find this information helpful. And, again, welcome!

Warm wishes,
Heidi

#3 nan

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Posted 15 February 2007 - 03:42 AM

Hi,
I am so sorry to hear about your daughter. I am much older , but I used to be a ballerina too. I injured my foot and had to stop. I have CREST(scleroderma), Sjogren's, and Fibromyalgia. When I look back at pictures from my dancing days it's hard to believe I could actually do that. Take Care and I hope that you can find some answers. This is a great place to get support.
Nan

#4 Sweet

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Posted 15 February 2007 - 06:01 AM

Hi Maia,

Welcome to the sclero forums. I'm truly sorry your daughter is ill. I think that watching our children struggle with illnesses is much harder than dealing with it ourselves. I don't have any other information to add at this time other than what Heidi already gave you, but I wanted to give you a warm welcome.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 maia

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Posted 15 February 2007 - 10:58 AM

your kind replies and good wishes are much appreciated, heidi, nan and pam!... I just wish that was all that was we needed to heal ourselves and our loved ones...

i've researched the stuff pretty thoroughly, but thanks for the info anyway, heidi...

and nan, I can just imagine the heartache you and my valorie suffer from not being able to dance as before, having been a total 'ballet mom' who'd seen her through her dancing training and performances from 4 to 19 [three times, she had to perform with broken bones in her feet!]... and then her later dancing and choreographing [NOT en pointe any more, thank goodness!]...

thanks for the warm welcome, pam... now, despite not wanting to wish it on anyone else, I hope someone sees this post who HAS all of the same ills, so I can get some feedback on possible treatments/cures/specialists...

love and hugs to all, maia

#6 Heidi

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Posted 15 February 2007 - 11:55 AM

Hi again Maia,

Here is a link that will take you to other's personal stories who have the same ills as your daughter. Here is a link specific to stories from those with Vitiligo (go to the bottom of this page) and one to stories from those with Morphia. You will see information in these stories on treatment and other ways of coping. I hope this helps.

Warm wishes,
Heidi

#7 scleroqueeny

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Posted 16 February 2007 - 07:47 AM

Yes to all three. Vitailigo on my kneee and around my waist on my remaining
breast and morphea. I try not to let it bother me, sometimes the morphea burns, I use a salve that helps quite a bit - if you want to know the name of it, send me a PM. your suppose to go easy with it, but it does work for me.