smurfette

Can we pass any of this on to our kids?

41 posts in this topic

Well, so when I asked this question I opened Pandora's Box! It seems like we all feel that these diseases may or may not be the exact ones to be inherited, but the predisposition to get some kind of autoimmune disease is inherited. It also is clear that since the classifying of the various diseases into specific groups with names and specific symptom groupings is relatively new, older family members were not diagnosed due to the state of medical knowledge at the time. The whole ANA testing did not exist. So some of us inherited the propensity to get an autoimmune disease from family members and we may in fact pass that propensity on to our children. That saddens me. I gladly pass on the shape of my nose and having the second toe longer than the big toe, but I feel truly sad that I might be responsible for either one of my kids getting the predisposition for an autoimmune disease. I hope that there is nothing in their lives that occurs to set it off. Perhaps medical knowledge will continue to grow so that it can remain a gun that is cocked but never fired.

 

What triggered the autoimmune response to become active in us was discussed in another post. For some of us it was a trauma, others it was some kind of virus. Others were unclear. What has become clear to me from all of your posts is that I have to watch my children to see if they are showing any signs of my disease or anything that appears to be signs of an autoimmune disease so that they can get proper treatment from the outset of the disease. My symptoms started full bore after my son was born but before my daughter, but in looking back they were there to some degree even before he was born. Maybe there is something to that theory about placental blood exchange.

 

My hope is that research goes in two directions. Curing the disease once we get it (or at least better managing of our symptoms so that living with our disease is like living with a minor condition that is managed by medication that keeps our symptoms at bay) and finding out how to keep people who have the propensity for getting an autoimmune disease from actually getting it. Almost like taking a blood test, finding you are positive and then getting a vaccine to prevent it. So much pain and suffering could be prevented.


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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Smurfette:

 

My mother had rheumatoid arthritis from as far back as I could remember. She died from lymphoma several years ago. My father had many "odd" physical problems including the skin peeling that I've recently experienced; they are citing medications in my case, but who knows? My oldest son has had psoriasis since he was a child.

 

My younger son, to date has shown no signs. He has also been able to slowly accept my illness. My older son still remains aloof and I believe it's a trigger reaction to fear. I used to think he was embarrassed by my illness and secretly angry with me for being sick, but now I believe it's a large fear in his mind that there may be the possibility of heredity of this disease. I believe out of sight, out of mind is his way of dealing with this fear but I think the stress of constantly worrying and obsessing over it could be the stress that triggers it.

 

Physically this disease can wreck havoc on us, but the I think the emotional impact is harder to deal with for both the patient and their families.


Tru

 

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

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<<It also is clear that since the classifying of the various diseases into specific groups with names and specific symptom groupings is relatively new, older family members were not diagnosed due to the state of medical knowledge at the time. The whole ANA testing did not exist. So some of us inherited the propensity to get an autoimmune disease from family members and we may in fact pass that propensity on to our children. >>

 

Hi Smurfette ,

 

I second this statement......truely belive this is correct!!! Some autoimmune diseases may need recessive genes....needing two parents and others may only require one parent passing on that defective gene. Heaven alone knows what *triggers* the disease to start........why some have mild symptoms and other have fast and ferious symptoms. Why do some people react so well to one drug (like Plaquenil) and others need SCT to go into remission?

 

Take care, Everyone.

Margaret

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I didn't know psoriasis is an autoimmune issue? My sister has it and also has carpel tunnel syndrome. Should I be worried? Mom has mild thyroid problem. (but shes in her late 70's and I think most women have a sluggish thyroid by that age).

 

Karen

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What I've heard/studied, I've understood that when it comes to rheumatic diseases or autoimmune diseases it's more likely for you to get one if there's a history of them in your family. You don't directly pass sclero to your kids, but there's probably a better chance for them to get sclero or some other disease. My mom has some kind of rheumatic disease and my sister seems to be having a mild case of Reynaud's phenomenon. I'm the only one with sclero and Reynaud's though.

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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

 

Chocolate, It isn't just for breakfast anymore!

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Smurfette:

 

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


Tru

 

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

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


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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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

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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.

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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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