Saturday, 28 April 2012

Interview with the mother of a young Ledderhose patient who has had Surgery

Today I have been speaking to Ellen's Mum from the Dupuytren's on-line forum. She has been kind enough to talk about her experience with her daughter and had a strong family history. I have been talking to her for a while and we are currently building her family tree and we have got a quite detailed background on the way and it is very interesting. 

1) Does your daughter have Dupuytren's and or Ledderhose disease? 

My daughter has Ledderhose in one foot (left).

2) This is the youngest case I have heard of for someone having Ledderhose, how long has she had it? And do you have a strong family history of the disease or was there a specific trauma event? 

Yes she is young - there are one or two other children out there but not many.  Ellen's PF came about following trauma to the sole of her foot, she caught it on a carpet gripper rod at the age of 18 months - she is now 8 1/2.  We have cases of Ledderhose, Dupuytren’s & Peyronie's disease in both sides of our family.

3) What treatments has she had for Ledderhose? 

Surgery was decided on following an ultra sound - at this point we didn't know what we were dealing with it was just an odd cyst like structure that had appeared after her accident.  It was growing so was removed when she was around 3 years old.

4) Clearly Surgery was not successful as it grew back but how was the process in someone so young? Was there a long time in crutches or any further healing time once off of crutches etc? 

Because we didn't know what we were dealing with we were given no advice about not walking on her bad foot.  It was bandaged when she left hospital - I changed the bandages a few days later (I am a vet nurse so quite used to doing this sort of thing!)  Stitches removed 10 days later.

5) Are you satisfied with the current level of pain that your daughter experiences? 

Obviously no parent is pleased that their children are in pain, Ellen had a bad year last year with her foot - she did complain of pain a lot but at the same time her feet grew nearly 3 sizes over the year - at the present time she is running around like a normal 8 year old.

6) If your daughter gets to the point that further treatment is required do you think you will go for surgery again or use a different option such as radiotherapy?

I don't think we (husband and I) could at the present time think about further surgery for Ellen.  The risk of regrowth is far too high for us as parents - and if we needed any further advice I think radio therapy would be a line we would think about.  Obviously once Ellen is 18 the decisions become hers, but with good information and help I hope she will be able to make the right decisions for her.