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smurfette

Can we pass any of this on to our kids?

41 posts in this topic

Hi Glenwood ,

 

I am sorry to hear about your Mom passing away. Please accept my condolences. I will keep you in my thoughts tonight.

 

Take care,

Margaret

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Hi everyone,

 

I saw my specialist this morning and I asked him about the possibility of passing scleroderma on and he said that there was a less than 5% chance of it. I get the impression that medical opinion varies on this subject, but thought I would pass on what he said anyway.

 

B x


Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

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Hi Princess:

 

I asked my rheumatologist yesterday and he says it seems to skip a generation. He also said if predisposed as with other autoimmune illnesses such as arthritis, lupus, etc., it would be more likely that individual would get the disease. He also reiterated what I've been reading here about a remission period. He said if I hang in there, it's usually between the 3-5 year mark and things slowly reverse as in skin softening again.


Tru

 

It is what it is...........

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Tru,

 

I almost didn't recognize you :D

That's great information that your rhumetologist gave. I just have a rough time with what point of the disease (I hate that word) I am in. I know people generally say when skin involvement begins, but what skin involvement? Does that mean skin thickening and tightening, or tangs, raynauds?

 

Just wondering so I can try to get an idea where I am at.

 

Karen

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Karen:

 

He mentioned the Telangiectasias and then the Skin Tightening as first and second.


Tru

 

It is what it is...........

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Karen:

 

I'm trying to post a new picture for an avatar but although they are the right size, it doesn't upload it to the Sclero forum. Spent two hours trying to figure it out last night and some time this morning. Have to keep trying. I very computer oriented, so I don't know what the problem is.


Tru

 

It is what it is...........

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Tru,

 

Aha! Finally a straight answer. My own doctor wouldn't even touch the subject of time lines with me.

Well that's good in a way, because I have at least 2-3 years of tangs under my belt. The skin thickening is more recent.

 

Thanks for the info. B)

 

Karen

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Smurfette,

I have read that whether Scleroderma is hereditary or not, some people are more disposed to getting this than others...

My dad died at age 63 with Lupus and Congestive Heart Failure.

I certainly believe I inheirited from him! My sister has RA. My brother has not been tested for any Autoimmune Disease even though he has RA symptoms. Thankfully Mom is 74 and has no signs of any!

Becky


Diagnosed with Diffuse Systemic Scleroderma May 2005

Raynaud's, GI, esophagus, skin and lung involvement.

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I know very little about my family healthy history. But my Dad has psoriasis and my mom used to have raynauds but it went away as she got into her early 40's.

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omaeva:

 

Did your Mom's Raynauds go away, or did she begin taking blood pressure medication as she got older? I ask because when I was diagnosed with CREST, I asked the doctor why I didn't have all the Raynauds attacks for the last few years. She said it was because I was on Norvasc for my blood pressure. I never put the two together.

 

Just a thought.


Tru

 

It is what it is...........

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Glenwood,

 

I am really late getting caught up on posts/threads...

 

I do want to express my condolences to you for your mom's passing on July 10th.

 

I also want to thank you for posting all you did in relation to your family history.

Please keep us in the loop as to how you're doing

 

smurfette,

 

You really DID hit the nail on the head when you adddressed tru's issues with her sons.

My daughter also reacted and continues to "blame me" for things that have "gone wrong' in her life.

The Sclero is just another to add to her "list" of things to be angry at me about... even though she

hasn't been diagnosed withSclero. She is soon to be 36 and has a beautiful daughter who is 15 and a

very supportive husband. I feel sorry that she feels this way, but though I've tried to right our relationship,

she refuses communication/contact fo any kind withme. Geographically, she moved as far away as she could,

ending up in MO. :unsure:

OH! Sorry I got side-tracked!

 

Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Susie,

I am so sorry to hear about your daughter. It sounds like she is just refusing to deal with her own issues and choses to blame you. She could be using you as the focus of her fears about getting the disease, all of her anger and every issue she has about growing up and just does not want to deal with at all. Running away seems like a great answer, but we all know that we take our issues with us to the ends of the earth. Playing the blame game works too, but after a while you run out of people to blame. Or it gets to be that you just cannot blame your mother for some of the things that are happening anymore. You have to start taking responsibility. She is reacting on a very immature and childish level.

 

I hope that as she gets older and starts to deal with her own daughter and the issues of a teenager and her own daughter's separation issues, etc that she starts to really understand and reflect on her relationship with you. I know when I was dealing with my son(who was and is a difficult person to raise, but I hope we are turning a corner!) my issues with my parents were in my thoughts regularly. I came to understand them. I reached a level of forgiveness. Perhaps your daughter will have you in her thoughts and will forgive and reach out. I came to understand that time is finite. Maybe she will too. Your disease is not your fault.

 

Also, as your granddaughter gets older you may be able to deal directly with her. It has got to be painful not to see or communicate with her. It would be wonderful if she could get to know the special person her grandmother is through direct contact. Once she is in college she will be on her own and more accessible without the gate keeping presence of her parents.

 

This disease does have a hereditary component that we all pass on! FEAR! We don't feel it, but our kids sure do - they watch us and whether they run or stay- deep down they are terrified that it will happen to them. Can you blame them? I would NEVER wish this on them. What loving parent would?!


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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I don't think anybody should feel guilty about having an autoimmune disease . My son does in fact have an autoimmune disease (not SSc) that is potentially life threatening (and there is a possibility that his brother may develop it too) but I don't feel guilty that he may have inherited the tendency to autoimmune disease from me. I do feel guilty about some of my worst parenting moments (like the time I shouted at my son for falling over after I had told him not to run). In that situation I had a choice about how to react. I didn't have any choice about passing on the tendency to autoimmune disease. I can't think there are many families who don't have a history of something that can be hereditary e.g cancer, heart disease to name just two. My son doesn't blame me for his illness, nor do I blame my grandparents for mine (My son however does blame his father for his crooked toes :).

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Regarding the children with anger at parents for possibly passing on genetic problems: Have those children considered that the only way to have prevented it would have been some sort of birth control? .. and what the would mean?.. but they are probably a little young to have thoroughly thought out the situation. Better to be able to play the cards you're dealt than not to get any cards...

 

Does anyone know of scientific studies of this issue of scleroderma and inheritance? I would like to be part of it. I wonder because all I have heard is hearsay and speculation. With my father and I having had the disease, I'm skeptical of the theory that it skips a generation, and would like to see real research - which must be underway.

 

(by the way, I'm not mad at my father for possibly passing on a genetic disease!)

 

When I think of the hearsay issue, I'm reminded of a medical text from the 1930s where I first read of Raynauds. The writer said that it usually effected young, Jewish women with a hystrionic personality type. Obviously that was his experience, but very wrong and unscientific (and a bit comical, in retrospect).

 

Craig

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Hi, I have a cousin with scleroderma, she's in a bad way, my 2 kids 25/22 both have Raynauds, and I have a little boy of nearly 14 with alopecia is all this related to this condition I often wonder and worry myself sick,

jaxsx


live life for today and not for tomorrow

 

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These are all great questions. We have a section on Causes of Scleroderma: DNA, Race, Genetics that answers many of these questions.

 

This includes the very recent study, Dartmouth researchers discover gene signatures for scleroderma. Distinct genetic profiles can discern different groups of patients with scleroderma. This discovery of distinguishing molecular subtypes within the disease offers new insight into the complexity of a poorly understood and hard to treat illness and opens a window for better diagnosis and targeted therapies.Genetic Engineering & Biotechnology News. July 15, 2008.


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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