Any Other Scleroderma Mother-daughters?
Posted 20 May 2007 - 06:16 PM
Recently my mother was diagnosed with Scleroderma. I thought she might have fibromyalgia due to her pain and fatigue, but we never expected this. She has been hospitalized for heart and lung problems several times the last few years. This time a rheumatologist was also consulted. He sent extensive tests and records to Mayo Clinic. Scleroderma was their diagnosis. She has been on oxygen 24/7 for over a year, but we had no idea the problem was Scleroderma. Now many of her symptoms make sense. She has skin involvement, but not like mine. She also has esophageal problems.
I believe she has Limited Scleroderma. I don't think the rheumatologist wants to give her serious treatment, probably due to her advanced age. She is seeing a lung specialist.
My sister has Lupus. It sure makes me aware of the possible genetic predisposition for autoimmune diseases, in addition to environmental and stress factors . . . .
Posted 20 May 2007 - 08:09 PM
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Posted 21 May 2007 - 02:16 AM
My 17 yr old daughter has Idiopathic Thrombocytopenia Pur?something She was diagnosed when she was 9 months old. I understand now that is an autoimmune disease too. I have had fatique , ice cold hands/feet (now I know that's raynauds) and joint problems since I was a teenager, but the scleroderma diagnosis just came about in 1998 ( or so) At first I was told I had rheumatoid arthritis, then no wait you have lupus and then....no it's CREST. That happened over a 3 year time frame. So, like you, I wonder about the genetic links too. Oh, and both my daughter and 22 year old son have asthma and have since they were infants.
Barbara aka relicmom1
Posted 21 May 2007 - 06:51 AM
Posted 21 May 2007 - 10:56 AM
Posted 21 May 2007 - 11:09 AM
I'm really sorry to hear your mom now has sclero. My mother died at age 59 of cancer, but now in looking back on things I believe she either had Lupus or Sclero, but we just didn't know. They have proven there is a hereditary link in terms of disease with autoimmunity.
Again, I'm sorry about your mom. and it was great to see you post again.
Posted 21 May 2007 - 11:26 AM
It's good to see you posting again! I had wondered where you were for some time now. I hope you are feeling better?
Although my elderly mother has never received a diagnosis of an autoimmune disease, I am almost certain she has had scleroderma most of her life. She's 90 now, and tends to agree with me, but says at her stage of life she doesn't want to go chasing a diagnosis now, understandably! With all her problems she has certainly done amazingly well to reach her present age!
From the time she was a small girl she had severe Raynaud's, and I personally have not seen anyone with such a severe case, not even myself. We shifted from where we lived when I was 13 to a warmer place, as my mother had such severe chilblains on her feet, due to the Raynaud's, that they went septic, and she was terrified of losing her toes!
Apart from the Raynaud's she has always had GI problems, often severe. IBS, bloating and pain, bad heartburn, and trouble swallowing. All these problems have contributed to her being very tiny, and unable to put on weight.
Her tissues always seem to have been unelastic, to the extent that she nearly died giving birth to me!
Her fingernails look like mine now look. Very ridged and dull. But her skin does not seem to be affected, except that she has always had shiny legs.
She has had problems of late with high BP, as I do, but in her case this may not necessarily point to anything other than being age related.
And here's the crunch.......... her father, my grandfather, also had shocking Raynaud's, digestive problems, and suffered from a chronic cough. He was also a very small, thin man as my mother is also small and thin. In his day I should think scleroderma was almost unheard of, and even in my mother's day she was just told she had "bad circulation" and "heartburn"!
I would love to be able to talk to my ancestors from way back on my mother's side, and see if any others had symptoms of scleroderma, or other autoimmune diseases!! I'm sure that scleroderma was more prevalent than we imagine in days gone by, but nobody recognized it and like my mother, just put it down to a variety of other illnesses!
Posted 21 May 2007 - 03:51 PM