I have been having problems with my hands for about a year and was just...

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  • So sorry to learn of your situation Jackie. Can you tell us a little more please? How old are you? How long have your hands been bothering you? Do you have any family members with DD? Can you share a picture? You may want to go back to the welcome message and read the post what type of DD do you have? It's estimated that only one in 20 will progress to contracture. A lot of people decide to take a wait-and-see approach. If a finger begins to contract you could have needle aponeurotomy. Best to have this done by someone with lots of experience. It can be done in office and I think the charge can be around $2000. Return to work is very quick in a day or two. These are things that I would focus on. Hopefully you will be able to find some employment and get insurance coverage that includes needle aponeurotomy and or radiation therapy.

  • I'll be 62 in October. I am of German descent and three generations of my family has had problems with their hands, mostly, carpel tunnel, however I noticed my dad's hands never laid flat, both hands had quite a curve to them, by his 80's. Went to a family reunion and met people for the first time and they shook my hand and said, "can tell by your hands, you are one of us." I started feeling tightness in my hands then loss of strength. Have had x-rays and no arthritis. I have had 5 surgeries on my hands two carpel tunnel and three tiger fingers. Several months ago I noticed a tightness in the bottom of my right foot, and thought wonder what that is. Now I found your FB page and know, Ledderhose disease. My body has always had a tendency to go overboard in building up scar tissue, on wounds, and after surgery. I had 3 Cesarian Sections and there were lots of adhesions to get through to get the next baby out.

  • Sound like you have a family history and disease in both hands and feet. RT is the most effective for LD for pain relief and halting progression. I think finding health insurance should be a top priority. This disease is very expensive to treat. Not the news you want to hear, but probably most realistic. 3 more years until Medicare!

  • It is what it is, like it or not. Medical insurance would be great. I have to laugh, they when it comes to employment, we do not discriminate, age doesn't matter, after probably 200 job applications for jobs I qualify for, I have to say it is obvious to me that experience doesn't matter.

  • So sorry to hear about your employment/insurance problems. Discrimination does exist; lipservice abounds, though. Hope things improve for you, both DD/LD and employment-wise.

  • That's a lot to handle! Sending positive thoughts your way!

  • I think xiaflex has a program to help with costs

  • Thank you so much .... I'll have to look into it.

  • The link below provides info on Xiaflex copay card. Best of luck to you, Jackie.