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Any Other Scleroderma Mother-daughters?

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7 replies to this topic

#1 Dee


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Posted 20 May 2007 - 06:16 PM

Four years ago I was diagnosed with Scleroderma/CREST. I had never heard of the disease. The first 2-3 years I was very sick. Thankfully, I'm better.

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 . . . .


#2 jefa


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Posted 20 May 2007 - 08:09 PM

Good to see you posting again, Dee. I hope that means you are feeling well -- I seem to recall you had to have surgery in the past few months. I am sorry to hear that your mother has now been diagnosed with scleroderma. It must be frustrating that all three of you (including sis) suffer from major illnesses when it comes to offering each other support. Do you have any other siblings? How old is your mother?
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 relicmom1


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Posted 21 May 2007 - 02:16 AM

Hi Dee!
My 17 yr old daughter has Idiopathic Thrombocytopenia Pur?something :P 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.
Peace :)
Barbara aka relicmom1

#4 kristi


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Posted 21 May 2007 - 06:51 AM

My sister has LUPUS and I have CREST. There is no doubt in our minds that our auto immune diseases are genetic, however I thought that direct relatives of scleroderma patients could not get it. I thought I read some where that your children are at more risk to get an auto immune disease if you have one but I though it also said that you don't pass this particular disease (slceroderma specifically) on to your children.?? Apparently that is incorrect.


#5 CraigR


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Posted 21 May 2007 - 10:56 AM

Not mother daughter - but father - son. I'm a 52 year old male with CRST and my father also had it. Neither my mother nor my 2 sisters have any autoimmune disease. Goes against the high prevalence of females with these diseases.


#6 Sweet


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Posted 21 May 2007 - 11:09 AM

Hi Dee,

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.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#7 Guest_Sherrill_*

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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!

Warm hugs,

#8 susie54


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Posted 21 May 2007 - 03:51 PM

I have mixed connective tissue disease and I know my mother has had it too but never got diagnosed correctly. She was just treated for her symptoms all her life. She is 85 and it all started when she was 23 years old but never really got rolling until she was 70 years old . My daughter has already popped up with problems and I hate to see that. It is truly a genetic gene we have going. Susie54