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Amanda Thorpe

Follicular lupus

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So my sister does have follicular lupus after all. Ironic that I have a "skin disease" as well.

 

One identical twin has diffuse systemic scleroderma, the other follicular lupus. Can someone please explain how genetic doubles have different diseases!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi  Amanda,

 

That IS very interesting and I am sorry you both have such unique illnesses.  However, I do bet there are research groups out there that would love to drain you both dry, from blood samples, in order to explore such a unique situation!   :wink:

 

Take care, Everyone.

Margaret

Mom to Gareth, 26 years old, DS/ASD

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Hi Amanda,

 

That's fascinating that your identical twin sister has follicular lupus, and you have systemic sclerosis. I think it makes a fair amount of sense, because you are both probably genetically predisposed to getting some sort of autoimmune disease on a basic level, and by a roll of the dice, the inflammation affected you each in different ways. (See Causes of Scleroderma: DNA, Genetics, Race)

 

Take a gander at our Scleroderma Registry section, and see if there's an appropriate place to donate some of your DNA. You'll see there is an Twins with Autoimmune registry in the U.S., but I don't know if there is one just like that in the UK, or not.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Hi Amanda,

 

It is interesting that both you and your sister have contracted different autoimmune diseases, although I bet you both would have foregone the interest to have neither of you afflicted.

 

I'm really sorry that your family have another health problem to contend with.

 

Best wishes to you both.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hey guys! So I got the sticky end of the lollypop stick, am I right? Unfair in the extreme!

 

Margaret you made me laugh! Shelley, there's no such thing here in the UK unfortunately and Jo, you're right!


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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