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double dose
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09/05/2009 19:42
Issleib2

not registered

09/05/2009 19:42
Issleib2

not registered

double dose

My Father has dupuytren's and so do I. As an autosomal dominate that meant my kids had a 50-50 chance of inheriting the tendency. But now my husband is developing dupuytrens too. That means the kids have a 75% chance. But there is a 25% chance that they will inherit the gene from both of us. Does anyone out there have dupuytren's in both parents? What are the implications for a double dose of the gene or genes?

09/05/2009 23:03
flojo 
09/05/2009 23:03
flojo 
Re: double dose

Neither of my parents, neither of my brothers and no one recalls any aunts, uncles, cousins or any of my relatives having Dupuytren's. I'm the lucky one. My guess is that maybe I got 2 recessive genes. My Dups started late in life, age 69, and it is not as severe as others have it.
I wish there were research on the gene connection leading to gene therapy.

Wolfgang, is gene research something that may be addressed at the Dupuytren's conference in Florida?

09/07/2009 00:32
Diana 
09/07/2009 00:32
Diana 
Re: double dose

It turns out that both of my parents have Dupuytren's. They are both 84 years old. My dad has had surgery in both hands and I'm not sure if he doesn't stretch or do any of the physical therapy (he had surgery in his 70s) or what but he cannot straighten his hands today although since he doesn't do much these days, he says it doesn't bother him.

My mom has nodes and cords but no contraction.

I'm 52 and noticed my first node/cord this Feb.

Diana

09/23/2009 07:02
wach 

Administrator

09/23/2009 07:02
wach 

Administrator

Gene research

Definitely!

Quote:



....
Wolfgang, is gene research something that may be addressed at the Dupuytren's conference in Florida?




Edited 09/23/09 10:02

10/07/2009 01:00
aioanne 
10/07/2009 01:00
aioanne 
Re: double dose

To all

Being of pure chinese stock, I had my doubts about the genetic factor. That is until last week when I found a couple of nodules and a dimple on my father's palm (89yrs). I knew he could not lay his hands flat on the table but I had assumed that was bec of age. He explained that he had several nodules on his hands and that they were hard at first but have gotten soft over the years and some have even disappeared. He thinks they started some 20 odd years ago. He also remembers the nodules itching now and again but other than that, nothing else. At 89 he still has full function of his hands, could make a fist but cannot fully extend his fingers. He was blessed to have had a mild case of dupuytren. Does ianyone know if nodules can get soft over time and disappear?

Because I have kids I have been searching the internet for genetic info. Of interest is the fact that the responsible gene is of incomplete/variable penetrance. From the reading I have done I take incomplete penetrance to mean that not everyone with the gene would have the disease. But that person can still pass on the gene to his/her children who in turn could then have the disease. And by variable penetrance I take it to mean that even though you have the gene, the variable factor controls the aggressive of the disease.

Some authors also believe that once you have the gene you will get the disease but because time of onset is later in life, some may die before the disease manifests itself. In men, they have put the age of complete penetrance at 75 not sure if women are later since they start later.

So with all these variables, maybe all of us have a genetic pre disposition, even those who do not know of any family member with the disease.


Can any of you who has/had parents with dup or ld give me any suggestions on how I should handle explaining to my children 24-30yrs the possiblity of them getting this disease. I want them to be know the genetics of it but I do not want them to live in fear.


Thank you



10/13/2009 13:42
lori 
10/13/2009 13:42
lori 
Re: double dose

I see no one has answered you. I don't have children but I can tell you how I explained to my family members.

I am a 54 year old female. I was diagnosed when I was 53. When I got the diagnoses from the specialist I went home and asked my mother if any family members had a nodule, cords and contracture. Oh yes, she said she remembered her mother having it but she was almost 80 when it developed and they all thought it was arthritis. I then asked the extended family if anyone had nodules cords, and contracture. Found out my aunt had it and also developed it at around the age of 80. She and her children all thought it was arthritis. My mother has just started getting it. So I am the youngest to get this and had to inform the family.

Diabetes runs in my family, my grandmother had it and so did my father. Do I worry about it? No I am aware of it but it is not something I think about all the time. I believe this is the same as with the DD. It is not currently happening to others in my family, therefore it is not on their minds. It is on yours and mine because it is happening to us. We spend a lot more time worrying about it than they do. I think since they know I am treating it and the results have been positive, that to them it is not something to worry about. I also believe most people hope (as I do with the diabetes) that it will not happen to them.

I explained what DD was to both my brother and sister and they understood, and were sorry it happened to me. They ask about my hand every time I talk to them, and since I am treating it and it has greatly improved, then I believe they do not worry so much about getting it. Or if they do they know treatment is out there and it appears to work. I think if my hand was continually getting worse, and I was complaining all the time, their attitude might be different.

I think a positive attitude about the outcome/future has been important not only to me but to my family. Yes it has changed my life. I need more help lifting, opening, gripping, etc.. I hope to begin playing golf and tennis again. I am fearful I will never be able to do the things I used to do. I don't tell my syblings that, I tell my mother and husband that. As I explained to my husband, I am 54 but my hand feels 10-15 years older when it comes to what I can do with it.

Good luck telling the children. My guess is that if you are positive in your approach, their response will be more positive.

Lori

10/13/2009 18:26
ellenpao 
10/13/2009 18:26
ellenpao 
Re: double dose

Both parents had dups. I have had an aggressive case for about 10 years now (I am 61). I have Dup and Ledderhose as well as Garrod's pads in 4 fingers. Have had NA approximately 6 times, and periodically go for "tuneups". I think the strong genetic strain has caused me to have a VERY aggressive case - although my only sibling has no evidence of dups at all. Go figure.

10/14/2009 00:58
aioanne 
10/14/2009 00:58
aioanne 
Re: double dose

Thank you Lori for your response. Diabeties and epilepsy are in my family as well as hypertension and high cholesterol. My dad has had dupuytren for the past 20 odd years but bec it was so mild, we assume it to be arthiritis. And now I have dup as well as ledderhose. Some genetics.

I am about your age - 57 and I can perfectly understand about the "old" hands. I am glad that you mentioned it bec I was getting concerned that not only was my palm changing, but also the tops of my hand and arm. Skin seems to be thinner and the sub fat is not there . My veins stand out and my finger tips are a bit"wrinkled". I also have ledderhose and I see the same changes on my feet. My heel has little or no fat now.

Bec Dup and LD has no fixed path of progression, and bec I am dealing with both of them on both sides, I still get pretty emotional about the ledderhose but more "comfortable" with my hands, since knowing that na can stop the contraction. It's been a month now, so I hope that soon I will be able to stop looking at my hands and feet all the time. Your attitude is most positive.

You take care




10/14/2009 13:17
lori 
10/14/2009 13:17
lori 
Re: double dose

Funny you mention the veins standing out. A friend was looking at my hand recently and mentioned the same thing. I was looking at my mothers palm a couple of weeks ago and even though she is 75 it was like looking at my own palm. It really gave me a shiver up the spine. Glad to know I am not alone in my "old" hand.

Lori

Edited 10/14/09 16:20

11/04/2009 18:24
bstenman 
11/04/2009 18:24
bstenman 
Re: double dose

It is fortunate in some ways that you know you have Dupuytren's and can alert your children and have them aware of the symptoms. It took me many months to learn what I had was Dupuytren's, in large part to the ignorance of my doctor, Dr. Dawn Motyka, who was interested in me only as a experimental subject for her acupuncture practice.

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understanding   self-reporting   Biospecifics   positive   developed   knowledgeable   aggressive   disease   treatment   dupuytren   Ledderhose   something   nodules   contracture   Radiotherapy   contraction   penetrance   children   periodically   approximately