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05/30/2009 00:45
nriedell 
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05/30/2009 00:45
nriedell
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Re: New to Dupuytren's
Hello. I, too, am a technical writer. I cannot help you with procedures in China but I can tell you that my doctor is telling me that hammering away on the computer 8-9 hours a day exacerbates Dupuytren's Contracture.
I have Dupuytren's Contracture in both hands. However, the right one was far worse than the left.Currently, only the pinkies are affected although my doctor found nodules under the ring and middle fingers as well as the thumbs. My right pinkie was curved at 65%. My left pinkie is curved at 45%. I just has my surgery on my right pinkie last Friday and I'm still in a cast. So bear with any typos or spelling errors.
I am currently getting a sensation of my hand going to sleep all of the time now and will talk to my doctor about possible nerve damage.
I am going to file short-term disability as I'll be out close to 6 weeks and I will be looking into full disability soon.
Sorry for the not such good news.
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05/31/2009 02:08
flojo 
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05/31/2009 02:08
flojo
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Re: New to Dupuytren's
Thanks, Newman, for the info on how to reach Dr. Steffens website. Great description of Dupuytren's Disease. I also learned that Morpus means disease. I couldn't stand to look at the pictures of the open hand in surgery.
Dr. Steppens' site does not support radiation therapy at all, but from other seemingly reliable sources that I have found, RT seems to be the only thing with any chance of stopping the progression of Dupuytren's. My NA straightened the 5-10 degree contracture on the thumb as well as the fingers involved. They are straight at this point, but the Dups is still active. I want to stop it. I still have questions to ask, but I'm all for preventing the progression rather than the major invasive surgery later. That's why I'm moving forward on RT with a 2/3 chance of success. I would have already had it, but I don't have any full weeks for the RT everyday until mid-July.
In my case, I have pros (being older at onset - 69 years old. still in beginning stage a year and a half after first noticing it and with many nodules but very little contraction on only one hand). I have cons (thumb most involved digit, some very early indication of Dups in left hand).
There is no guarantee with any of this right now. There seems to be more going on with gene therapy research and I think that will ultimately give us the best options. I wish that could be done quickly, but I think it will be quite a bit into the future. Any ideas on how we can support gene therapy research?
In reading over this post, I used seems or seemingly several times. That's the way it is with this disease. No one really knows so everything is at the "seems" level. Even so, of the many genetically connected diseases, others are still much worse than Dupuytren's.
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05/31/2009 06:20
newman
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05/31/2009 06:20
newman
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Re: New to Dupuytren's
Hi flojo, Australia Calling,The issue of RT on Dr Steffens Site has been raised before. I dont know why it is there. Prof Seegenschmiedt sent me to Dr Steffens to get his opinion ,as I've had some 15 hand surgeries. He certainly was not against the RT in my case.With regards to 'WHAT CAN WE DO ? 'Are you aware that in the US. there is now a Dupuytren Foundation formed by Dr Charles Eaton. Google' Dupuytren Foundation USA. ' Also have a look on this web page - click Donations .(There is a nice photo of Wolfgang and Charles Eaton.) It is all a mater of money. I was told 30 yrs ago there no money ever gone into this disease-Nobody dies from it .Now with Surgery being very expensive and with energy of people like Dr Eaton future generations may have a cure. All Donations help. Regards.
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05/31/2009 12:23
patandpaula
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05/31/2009 12:23
patandpaula
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Re: New to Dupuytren's
 Newman,
I hate to ask, but could you send the link for Dr. Steffans website? I am having trouble finding the one you are talking about, have tried twice now with no luck.
Paula (technically challenged, obviously)
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05/31/2009 18:45
flojo
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05/31/2009 18:45
flojo
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Re: New to Dupuytren's
Hi Newman,
I went to the website for Dupuytren Foundation.org. I will contribute toward research. I assume that I have to make a separate donation at the address in Germany to support this website and all that Wolfgang does. Is that true? This website has already been very meaningful to me. I have been able to get the information I needed to make decisions that I feel sure are best for me.
I didn't find Wolfgang's picture with Dr. Eaton.
My donations will not be earth shattering, but every little bit helps.
Flora
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06/01/2009 05:42
Wolfgangnot registered
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06/01/2009 05:42
Wolfgangnot registered
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Donations
Hi Flora, Dupuytren Society and Dupuytren Foundation share the same goals and are working closely together. The Foundation is US based and is therefore able to issue tax receipts for US citizens. This web site is managed and paid for by Dupuytren Society and donations keep us afloat. They are more than welcome! But if you are a US citizen you might as well donate to the Foundation and benefit from the tax receipt. There is no competition between both organizations we rather help us mutually.
For the time being a personal check is the best way to donate to either organization. For donations to Dupuytren Society you might also transfer donations electronically to the bank account mentioned on http://www.dupuytren-online.info/donations.html (that's also the page with the picture).
Thank you so much for supporting us!
Wolfgang
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06/01/2009 05:54
WrittenConcepts 
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06/01/2009 05:54
WrittenConcepts
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Re: New to Dupuytren's
Quote:
Hello. I, too, am a technical writer. I cannot help you with procedures in China but I can tell you that my doctor is telling me that hammering away on the computer 8-9 hours a day exacerbates Dupuytren's Contracture.
I have Dupuytren's Contracture in both hands. However, the right one was far worse than the left.Currently, only the pinkies are affected although my doctor found nodules under the ring and middle fingers as well as the thumbs. My right pinkie was curved at 65%. My left pinkie is curved at 45%. I just has my surgery on my right pinkie last Friday and I'm still in a cast. So bear with any typos or spelling errors.
I am currently getting a sensation of my hand going to sleep all of the time now and will talk to my doctor about possible nerve damage.
I am going to file short-term disability as I'll be out close to 6 weeks and I will be looking into full disability soon.
Sorry for the not such good news.
Thanks for the information. Sorry to hear of your misfortune and recent surgery. I'm sure typing doesn't exactly help the problem, but of course, don't really have much of a choice right now, as Technical Writing is the work that pays the bills.
Just to follow up on my original post, I received some feedback from the doctor I visited in Shanghai a few weeks ago. He mentioned during that visit, that he believes Dupuytren's to be associated with an immune disorder. I don't recall seeing any information about that anywhere, but that doesn't mean it isn't currently being speculated. He further suggested that if my situation worsens, he could place me on some medication to help that immune deficiency, but warned the medication had negative side-effects.
Here's a copy of what he wrote:
Quote:
Your final pathological result is:
An increased quantity of collagen deposited. The collagen fibers were thicker and partially aligned as paralleled bundles. The tissue was infiltrated with chronic inflammatory cells in the upper dermis.
Your laboratory test has no remarkable findings.
Diagnosis: The diagnosis is localized scleroderma based on pathological findings and clinical manifestation.
This is a kind of autoimmune reaction (disorder).
At this moment we recommend follow-up every month. You can use immune suppressant ointment for topical use. If you feel pain and finger mobile limitation please come for local injection. At this moment we don't recommend to use systemic medication. If the problem progresses, you may need to take immune suppressants that will have some side effect.
If you have any question or concern feel free to contact me.
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06/01/2009 08:18
newman
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06/01/2009 08:18
newman
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Re: New to Dupuytren's
Hi Flojo Australia Calling. When I mentioned 'this web page' it is Dupuytren Society home page and click Donation on the left margin. I knew what i meant! Regards
Edited 06/01/09 11:20
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06/01/2009 08:22
WrittenConcepts
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06/01/2009 08:22
WrittenConcepts
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Re: New to Dupuytren's
I know I'm new here, and certainly don't want to offend anyone, but it's interesting to me that my thread has been hijacked with things that have nothing to do with my original post. I've tried several times to get members here to remain on topic, but a few people keep discussing things like fund raising and so on. Is there a mod out there who can help with this, or is a mod involved with the hijacking?
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