DUPUYTREN S AND LEDDERHOSE DISEASE DO S AND DON TS. DDSG Members help me out

DO build a team of expert physicians to follow your care and request that your doctors collaborate with each other and work in partnership with you.

DO consider only treatments that have peer reviewed clinical studies that confirm effectiveness specifically in Dupuytren's or Ledderhose Disease.

DO ask that your hand surgeon rules out other potential causes of pain, like arthritis, carpal tunnel or cubital tunnel. Allow him/her to do a full work up of your hands.

DO keep a journal that chronicles changes and any progression and share this with your doctor.

DO share your entire health history with your doctor as well as any medications or supplements you are taking as these may be contra indicated and in some cases may affect your treatment.

DO all that you can to get a high quality insurance policy that allows you to seek treatment with the very best physicians treating these diseases. Dupuytren's and Ledderhose treatments are expensive, you need good insurance.

DON'TS-------------------- ----------------------------------------------

DON'T fall for claims of miracle cures - there is no cure for Dupuytren's Disease.

DON'T choose doctors who only perform surgery. Surgery is now considered the last resort.

DON'T stretch aggressively - it may stimulate or accelerate your disease.

DON'T share posts from this group to your Facebook wall!

DON'T use the Facebook app to access the forum. Log on using a browser. The app does not allow you to access our files and full information from permalinked posts.

DON'T expect to be able to make a treatment decision right away.

It takes time to gain a thorough understanding of the diseases, your own potential course of the disease and your eligibility for different treatments.

DON'T expect a one size fits all approach to your care.

DON'T rely on the information on the forum alone. Confirm everything that you read with your trusted physicians.

DON'T try to sell your products here - it will result in expulsion from the group!

DON'T promote easy solutions to this complex problem. If you have just been diagnosed with a single nodule, be sensitive to the fact that we have a wide range of sufferers on the forum with a long history of dealing with the diseases and in some cases have suffered amputations.

%d comments
  • Thank you! I am now going forward in finding a doctor and will use this when discussing this disease with my family doc to get a referral

  • Oh please print our lists of questions to take with you in the welcome message!

  • I have done this !!

  • Since I am going to see Dr. Denkler, I don't think I need to take a list. I am, however, taking some medical background with me.

  • Today I scheduled a consultation in May with Dr Pess. It's a three hour trip there, but well worth it. This is a big step for me; think I've been burying my head in the sand , pretending all this will just go away.

  • Great post Leslie!!