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Logan5

What are the chances of this happening?

12 posts in this topic

My mum was finally diagnosed with I'm guessing systemic scleroderma, as her stomach has almost packed up. Well recently I was going through my late father's medical records, my mum and dad split back in about 1979, and his new wife died of systemic scleroderma.

 

What are the statistical chances of this? Is there any research showing clusters in different parts of the UK?

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Hi Logan,

 

Well, partly it would depend on if your mother is actually diagnosed with scleroderma, since there are many ailments that can affect the stomach. I'm not sure what the statistical odds might be in any given family.

 

I'm not aware of any particular clusters that have been identified in the UK, however some cases are known to be caused by genetics and by environmental exposures.  See Causes of Scleroderma.

 

I have had several in-laws who also have scleroderma, but in different sides of the family and different parts of the country. So sometimes I think it just boils down to chance.

 

I'm sorry that you've had any of it in your family, though, and I hope that there is something that will make your mother's stomach a bit better. Please keep in touch.

 

: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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Hello Logan

 

Well, I know of a woman with systemic scleroderma and her ex husband's mother died of it, years before she herself was diagnosed. Weird eh?

 

There are plenty weird things under the sun, especially when you throw scleroderma into the mix.

 

I hope that whatever your mother has is resolved and not scleroderma.

 

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 Logan,

 

Welcome to these forums!

 

It's rather an unhappy coincidence if two members of your family have been afflicted with scleroderma, although it's possible that this could happen.

 

I hope that your mother's stomach problem is sorted out and doesn't turn out to be scleroderma.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Shelley's comment about several inlaws having Scleroderma is interesting. With a statistical chance of 1 in 10,000 that is even more puzzling.

 

Since in laws are not blood related, it can't be a genetic issue, so I'm wondering whether there is an environmental issue here. Did these in laws live in the same area, work in the same industries, etc.?

 

The other possible environmental issue could be air pollution - do they all live in an area where perhaps certain industries could be polluting the air, water sources, etc.?

 

This is quite baffling.

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Thank you all for your replies.

 

My mother has been diagnosed with systemic, I believe. Her stomach is at the point where she now has to have vitamin B injections and milk shake consistency food. Her hands look bad, all swollen and they thought at one point it might be lupus but I think the stomach issue nailed it down for the rheumatologist.

 

My step mother I think went down a similar route, I didn't have any contact with my late Dad and step mother for about 10 years, but from peoples' accounts she was tube fed and had a lung problem, so would guess it was systemic.

 

The only link between them is my Dad, whose mother interestingly died of rheumatoid arthritis amongst other conditions, and the years they spent living in the same location (Canvey Island). I remember when I lived there you would occasionally get some very strange smells from the oil refinery. The only other link is my Dad's occupation which was sheet metal working. I wonder if both partners were exposed to a dust of some sort from washing his overalls, or could my Dad have been a carrier of some type of virus trigger inherited from his mother?

 

On a side note, I might be over simplifying this, but I heard they had got a breakthrough treatment for Multiple Sclerosis. It involves destroying the faulty immune system and replacing it with a new one from the patient's stem cells. Could this be applied to scleroderma? It might not repair any damage but it should halt it.

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Hi Logan,

 

The causes of scleroderma can be very complex, as stated in Shelley's link and it can be attributed to many different factors.

 

We have a medical page on Stem Cell (Bone Marrow) Transplantation, which is sometimes an option for patients with systemic scleroderma. However, it's not a treatment to be entered into lightly and can be associated with toxicity and treatment-related mortality.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thank you for the link. Reading some of the links it sounds as though its one of those types of treatments where if it doesn't cure it will probably kill. I do find it strange they can't make these things safer.

 

I think as my mum is relatively stable and 66 years old this might not be the best course of action at the moment. not until they come up with a treatment that doesn't involve killing the patient will she consider anything I would think.

 

I think this disease is kind of like the replicants in blade runner, especially when Roy goes to see Tyrell and asks for more life, and then goes onto to ask if they had tried various methods of extending life only to be told none of the patients survived the treatment.

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Hi Logan

I have systemic scleroderma, and so does my cousin. Our dads are brothers. No idea of any environmental reason for this, I think it's genetic, as there are quite a few autoimmune conditions in our family.

Hope your mum is doing ok.

Regards

Deb

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Hey Logan maybe that's the cure, it kills you! Sure you're dead but you don't have scleroderma anymore! Oh dear.

 

Totally agree, you'd have thought that treatment(s) would be safer by now and by the way, where's that cure?

 

Hope all is as well as it can be and 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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My mother-in-law was diagnosed with scleroderma a few years before I was. She was in her late 70's/early 80's and had limited. I was diagnosed at age 52 with diffuse. We had different occupations but both lived in an area where there are a lot of refineries.

 

Almost all of her 7 children, 6 of them female, have some sort of autoimmune disease. All of my cousins on my mother's side of the family also have autoimmune diseases. My mother-in-law and I were the lucky ones to get scleroderma. I just hope it stops here and none of my nieces/nephews ever have to deal with this.

 

miocean


ISN Artist

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