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Morbus Ledderhose in Adolescence
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04/05/2008 08:33
WhiteMan 
04/05/2008 08:33
WhiteMan 
Morbus Ledderhose in Adolescence

Hi all affected MD and ML friends ...

I am new to this forum, but have to tell my story whixh is somewhat surprising
to many of you ...

I myself experienced Morbus Dupuytren at the age of 39 years just 2 years after my
9 year old son had experienced Morbus Ledderhose. He was operated but developed
a huge relapse nodule which caused a lot of problems for him (pain, function loss, etc)
We were very unhappy with the situation, as no other surgeon was willing to operate
again and we were afraid of doing surgery at all, but the nodules grew more and more!

We found Prof. Seegenschmidt at the Department of Radiotherapy at the Alfried Krupp
Krankenhaus in Essen ( http://krupp-krankenhaus.de/radioonkologie ). He was very
knowlegable, but reluctant to use radiation for a child ... He managed to let us consult
a very experienced SURGEON, who explained to us that SURGERY was a fault to begin
with and that he would never recommend to do a second operation. So we went back
to Prof. Seegenschmiedt and convinced him to give it a trial ...

After ONE course of radiation therapy in Essen with 5 x 3Gy the disease on the foot sole
stopped completely, the nodules even shrunk over time > 50%. My son is now 16 years
old and has foot size 46 (about 11 US), no late effects, no skin alterations at all.

My own treatments 2 years later was necessary because of growing nodules in both of
my hands. I was treated with 7 x 3Gy in TWO weeks, i.e. 3 treatments per week, e.g.
Monday - Wednesday - Friday (each of the weeks) and the last treatment on Monday in
the 3rd week. The treatment went very well and I am currently in stable condition.

As far as I know, Prof Seegenschmidt uses another treatment course and compares the
two schedules. The other schedule is 5 x 3Gy within ONE week, a BREAK of 3 months and
then another 5 x 3Gy within ONE week (total dose 30Gy) ...

I have full confidence in the management of Morbus Dupuytren and Morbus Ledderhose
with radiation therapy, even if it has to be done in adolescence, because there are no
other meaningful treatments available ...

Has anyone else knowledge about MD or ML in children or younger adults ? Let me know ...

... search carefully ... select carefully ... decide with wisdom ... trust in confidence

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