Runs in families????

When I was first diagnosed with scleroderma in 2000,no one in my family had ever heard of or experienced anything like it. Now I have an aunt, 10 years older with lupus, a second cousin with mixed tissue disease, female, 2 third cousins with scleroderma, 1 male, 1 female.I have a first male cousin in kidney failure and my son is 34 and has started to have swelling and circulation problems. I have no doubt this curse is inherited.

6 Replies

  • I'm inclined to agree, I don't know why professionals always dismiss this . We'd never heard of it until I was diagnosed then started to remember my Grandfather complaining of similer symptoms. Nobody took any notice of him and he died being thought of as a grumpy old hypochondriac.I'm sure it's just that Doctors are so afraid of the consequences of being wrong that they refuse to even entertain any ideas other than what's in front of them. At least we know what to look out for in our future generations, not that it will help them much.

  • I learnt about RSA from my father who had Raynaud's. Then I discovered my paternal grandfather also had it....

  • My mother had raynauds for years and then got primary biliary scirrosis and had to have a liver transplant. I have raynauds and scleroderma. I am sure she must have had it too.

  • My Dad also had mild raynauds in a couple of fingers when exposed to localised cold. I have moderate Raynauds and Systemic Sclerocis. I was worried about passing it on if I had children but doctors told me 20% of the population carry the gene but only some get it as it is triggered by unknown factors. Luckily my daughter seems fine so far.

  • Too of my daughters have had positive tests for scleroderma ,And one has raynauds . one also has ribromyalgia , they are both in there 30 ts . very worrying. i do believe that my late mother also had some of the symptoms . i have systemic sclerorderma , plus a number of other conditions

  • Ah yes,by reading all of your replies,and adding mine,it appears so clearly to run in families.My sister has lupus and her son,my nephew has Raynauds symptoms.My father has Raynauds and Aunty has scleroderma .I have Scleroderma,Raynauds,and Rheumatoid arthritis!But my cat loves me ;) x My family went for genetic testing in London about 15 years ago,and they found 'nothing conclusive' except that we were all definitely related!Clever doctors!

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