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Can we pass any of this on to our kids?


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#21 smurfette

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Posted 27 July 2008 - 06:57 PM

Tru you are absolutely right about the emotional impact. That is a huge and complicated issue.

1. From our kids perspective it is hard to see a parent as less than omnipotent and there to take care of the child - the parent is suddenly sickly and needy and maybe even mortal.
2. The parent not only has a disease but may pass that disease onto the child - cause for even more resentment - not only is the parent not perfect and able to care for themselves but they can be responsible for making the child sick
3. As a child if our parents are aware of our illness, our parents are dealing with a child with a very serious illness - they are dealing with the guilt of having passed on a very serious disease to their own child and possibly out living their own child, which is clearly something that no parent ever wants to contemplate - it is just not the natural order of things - it is too painful to accept
4. For the siblings they are looking at their own health to see if they are the lucky ones who escaped the same fate - and the issue of how much are they willing to come to your aid can become a sore point in the family

Everyone reacts in their own way to the news. Some people run from the idea of illness and cannot offer any kind of emotional support. They cannot get beyond their own needs. I have never told my parents because everything in life is about them and frankly I cannot prop them up and comfort them about me being sick. I need to be able to fight the disease and work on feeling better every day without having to console them about their daughter with scler. Besides they have no discretion and I would be meeting perfect strangers who know my parents who would say that they know that I am the daughter with scler! So much for privacy and dignity! I don't need the indiscretion and my children do not need to be reminded at every function that they attend with my parents. They know I have it - They don't have to live it every occasion we are together with my family.

Tru - it is what it is indeed! What emotional issues were you implying - did I cover them?
Smurfette

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#22 truman

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Posted 28 July 2008 - 01:57 AM

Smurfette:

You could have read my mind; thank you for expressing the emotional impact so accurately.
Tru

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

#23 smurfette

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Posted 28 July 2008 - 01:47 PM

Tru - A case of great minds thinking alike this time. Our journeys have been different, but the emotions ring true
Smurfette

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#24 CraigR

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Posted 29 July 2008 - 05:53 AM

I have CREST (CRST) scleroderma, and so did my father - so I assume some sort of genetic component. Though there are plenty of cases with no one else in the family with autoimmune diseases so ???

Craig

#25 Glenwood

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Posted 29 July 2008 - 10:34 AM

Hello all,

I'm really glad I saw this topic today. I haven't posted in awhile since early July when my mom went under hospice and I regret to say she passed away on July 10th. My dad tried to keep her at home but it became too much for him and she started fading too fast when she wasn't getting any fluids. It's been really hard for me to read and communicate.

Anyway this issue of heredity has been coming up with me over the past couple of years and my mother and I talked about it previously but I found recently how secretive she's been about her illness. After my hysterectomy last year not only am I dealing with hormonal issues but my leg/feet tingling worsened and I refuse to settle with the "restless leg" syndrome diagnosis. My grandmother has suffered with that disorder for most of her life and has been addicted to nothing but painkillers because of her misdiagnosis. I've been seeing a neuroligst who did find a significant B-12 deficiency and for awhile the supplements were working but now it's back again. Might have to have injections now. But after mom died I had another appointment and I told her I was becoming more and more concerned about this hereditary non-understanding of scleroderma after my own research and though I don't believe I have scleroderma, like many of you, I do believe that I am now predisposed to other autoimmune disorders.

I also told her that I now have a 3rd cousin on my mom's side who was finally diagnosed with lupus. Originally I went to her afraid I had MS. So, she did not disagree with me on this visit and ordered more blood workup. More to come.

#26 Margaret

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Posted 29 July 2008 - 11:13 AM

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

#27 PrincessB

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Posted 30 July 2008 - 10:19 PM

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?!)

#28 truman

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Posted 31 July 2008 - 12:21 AM

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...........

#29 Karenlee

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Posted 31 July 2008 - 03:16 AM

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

#30 truman

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Posted 31 July 2008 - 08:23 AM

Karen:

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

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

#31 truman

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Posted 31 July 2008 - 08:43 AM

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...........

#32 Karenlee

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Posted 31 July 2008 - 08:59 AM

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

#33 bowbec

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Posted 08 August 2008 - 03:39 AM

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.

#34 omaeva

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Posted 08 August 2008 - 08:25 PM

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.

#35 truman

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Posted 09 August 2008 - 01:34 AM

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...........

#36 debonair susie

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Posted 19 August 2008 - 04:32 AM

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)

#37 smurfette

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Posted 19 August 2008 - 06:12 AM

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

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#38 lizzie

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Posted 20 August 2008 - 01:51 AM

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 :).

#39 CraigR

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Posted 20 August 2008 - 06:51 AM

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

#40 jaxs

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Posted 25 August 2008 - 04:25 AM

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
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