Thursday, 26 July 2012

Wonderful e-mail

Everyone knows that I love it when people get in to touch with me to discuss Ledderhose or talk about the blog and give suggestions and I have posted on here several times in the past about it. Yesterday I got a wonderful e-mail from a very kind lady who wanted to express her thanks for this blog, here is the e-mail: 


Hello Gary,

Well in common with many others, you have given me more information about Ledderhose Disease than any of the doctors I have seen in the last eighteen months - until today.  Thanks entirely to you and your blog, I learned about Dr. Richard Shaffer and his work at Guildford.  Unfortunately I started with Dupuytrens in one finger eighteen months ago and because at that time I knew nothing about radiotherapy, I opted for Xiapex treatment.  Although at first I had a wonderful straight finger, it made the disease become more aggressive and eight months later I now have DD in both hands (four fingers) and two LD lumps on each foot.   Did the Xiapex cause this?  As Dr. Shaffer said today, we will never know because the newspapers only publish the success stories, not the follow up from patients months down the line.  How I wish I had left well alone!

However, Dr. Shaffer recommended I follow the surgical route to have my left hand treated as there are raised cords and nodules now in the palm and both the little finger and the ring finger are bent - the little finger far worse now than when I had the Xiapex injection!   He did feel, however, that the lumps on both feet were suitable for radiotherapy and he has booked me in for treatment in August at the Royal Surrey County Hospital.

Gary, I cannot thank you enough for all your hard work and research into this disease.  I told Dr. Shaffer how impressed I was with your web site and he said if he had seen it before meeting you for the first time he would actually have felt a little intimidated by all your knowledge.  You Gary, are akin to one of those people on the X-Factor to whom Simon says "You don't know how good you are".  You don't know how much good you are doing to spread the word.  I am not sure that Ledderhose and DD are as rare as people think.  I live in a fairly small village in Wiltshire and I have already found two other people suffering with symptoms of DD and Ledderhose Disease who quite simply didn't know what they were and unbelievably had never mentioned their "lumps" to a doctor.   Hopefully they will now have enough information to ask for the right treatment before their fingers start bending and their feet start hurting.

What I cannot understand is why we have to pay for radiotherapy for feet when it is free on the NHS for hands.  If it is caused by the same disease why should NICE differentiate?   I have already paid for Xiapex treatment which surely must be cheaper than a patient undergoing surgery with all the follow up visits but Xiapex is also only available privately.

Gary, I am so sorry you have had to change your career pattern because of this awful disease.  Considering all the research you have done, I can only think the world has lost a good scientist.  Are you going to continue with your studies part-time?   My son is MCSE, CCNA, VCP qualified and although his interest lies in computer infrastructure and security, he does do a little programming.  I only hope you don't find the world of computers a little "flat" after being involved in scientific research.

I wish you all the very best for the future and hopefully you will be able to run and play football in the future.  I can only count my blessings that my problems didn't start until I was in my sixties.  Although I am annoyed that all my plans for retirement are now on hold and my savings are being spent on hospital treatment instead of the hill walking holidays I was looking forward to, this is nothing compared to someone of your age suffering from LD.   I have always been super fit (used to run for my county) love rambling with my dog etc. etc.  Incidentally I have no relatives who have suffered from either disease so it is a mystery where this has come from.

Looking forward to reading your next instalment Gary. 

Kind regards,

Julia