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Scleredema Adultorum Buschke


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5 replies to this topic

#1 nhirzoiu

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Posted 14 October 2011 - 05:56 AM

Hello All,

I'm new here. My disease is scleredema Buschke. I would like to be contacted / to contact people with same issue. Thank you.

#2 Sheryl

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Posted 14 October 2011 - 06:14 AM

nhirzoiu, welcome to the ISN forums. You will find so much medical information in our medical section about Scleroderma and Sclerederma. I don't know anyone that has Buschke to have them write to you. Hopefully someone will see your post that has this diagnosis and write to you. Others will give you a welcome greeting and information you are seeking. I hope to see that you come in often with any question that are of concern to you.
Strength and Warmth,
Sheryl

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#3 Joelf

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Posted 14 October 2011 - 07:50 AM

Hi Nhirzoiu,

Welcome to these forums!

I'm sorry to hear that you're suffering with Scleredema Adultorum Buschke and I've included the link to give you some more information which I hope will be helpful to you.

I must admit that I can't recall any of our members having this rare disease but hopefully if we do have anyone they will contact you with more information. In the meantime I've included a patient story here which again may give you more help and advice.

Do please keep posting and let us know how you are faring.

Kind regards,

Jo Frowde
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#4 Shelley Ensz

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Posted 14 October 2011 - 08:00 AM

Hi Nhrizoiu,

Welcome to Sclero Forums! I'm sorry you have Scleredema Adultorum Buschke. As you can see, we do have the two patient stories on our main website about it. It is a very rare scleroderma-like disease so you may find it quite difficult to find information on it.

That's one of the reasons that we also serve people with "scleroderma-like" illnesses around here. So please feel free to speak up about your symptoms or questions. Make friends and settle in as this will probably be your primary source for support. You may need to remind us frequently though that you have Scleredema and not Scleroderma, just to keep our advice on the straight and narrow.

Here are some warm hugs, to welcome and comfort you.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Amanda Thorpe

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Posted 17 October 2011 - 05:51 AM

Hello Nhrizoiu,

Welcome to the forums! Ihope the information provided so far is helpful to you. As you can see from the personal stories there aren't many of them about, maybe you might think of adding yours to the collection? You can include your email address so that people can contact you in response to your story, may be a way of contacting more people with Scleredema Adultorum Buschke?

Take care.
Amanda Thorpe
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#6 Sweet

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Posted 17 October 2011 - 10:47 AM

Hi Nhrizoiu,
Let me ad my warm welcome. You've been given a few great links, and I do hope you will find them useful.

Again welcome! :balloons:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)