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Risk of developing scleroderma

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#1 JordanCUK



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Posted 07 March 2017 - 10:10 PM

Hey everyone ! I'm 19 and a man and I am just wondering the risk of me developing Scleroderma and if it is genetic.


My mother has quite severe Scleroderma. It was developing just before I was born but improved during pregnancy (Due to the extra pint of blood). She also has Raynaud's as an overlap which developed when she was younger.


I have showed no symptoms that have cause for alarm but am not sure of all of the symptoms that can be shown, my only longstanding condition is IBS and I have no Raynaud's. There is no known history of scleroderma in the family but some of rheumatoid arthritis.


Do I have a high risk of developing this? What should I look out for?





#2 Joelf


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Posted 08 March 2017 - 10:44 PM

Hi Jordan,


Welcome to these forums!


I'm sorry to hear that your mother is suffering with scleroderma. There are several types of scleroderma that are known to run in families, such as Familial CRST w/ Sicca, and Familial Progressive Systemic Sclerosis. This does not mean, however, that scleroderma is a "genetic illness" per se. They estimate that it is genetic in only 2% of scleroderma patients. However, there are some genes that set the stage for the development of autoimmune disease in general, and scleroderma in particular. I've included a link to our medical pages on Genetics, and also Scleroderma Symptoms, which I hope you'll find helpful and informative.


Obviously it's impossible for me to predict whether you will develop scleroderma; it's never certain even with positive antibodies as there are so many variations of the disease and it's symptoms affect everyone differently. I do realise that you are concerned, as the disease is in your family, but would suggest that you try not to worry about whether you will develop it in the future (stress and worry are the very worst things for autoimmune diseases) as even in the worst case scenario, it could simply mean that although you may have some symptoms, you possibly may never go on to develop the full blown disease.


As with any illness, if you do have symptoms which are worrying, then I would suggest that you consult your general practitioner, if only to put your mind at rest.


Kind regards,

Jo Frowde
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#3 dimarzio


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Posted 14 March 2017 - 02:50 AM

I read that the heredity factor was 1%, but I'm sure Jo's figures are more accurate. The only symptoms I had earlier in life were heat intolerance, occasional strange cramps in odd places and later on, aching ligaments and tendons resulting in stiffness and discomfort. Not even sure whether these were related.

#4 dimarzio


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Posted 14 March 2017 - 02:53 AM

Oh yes, and Ive always had very sensitive skin too. Anything containing wool is itchy to me.

#5 Shelley Ensz

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Posted 14 March 2017 - 08:24 AM

Hi Jordan,


Welcome to Sclero Forums. I'm very sorry your mom has scleroderma, and send my best wishes to all of you.  As Jo pointed out, scleroderma is hereditary in only about 2% of cases, where it is known to run in the family.  Scleroderma predominantly strikes females (at least a 3 to 1 ratio of women to men), so that further reduces your odds.


This means your risk for scleroderma is very low, compared to the more popular ailments.  Thus it is far more likely to pass away from heart disease, lung infection, HIV/AIDS, or COPD.  You are at an age where you can develop good health habits that will likely help you sidestep most of these to increase the odds of living healthfully to a ripe old age. Eat well, get fresh air and exercise, practice safe sex, and steer clear of any sort of smoke or street drugs. Find some healthy sources of happiness and joy every day, to inspire you to keep on living well, and to help buffer the stress of your mom being so ill.


Most of all, remember we are always here for you, and you are always welcome here.  Most of us would rather have scleroderma ourselves than to watch a loved one suffer with it.



Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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