Initial Diagnosis
I have Dupuytren's Disease. I have known this for definite for just under a week, but have suspected it for around 6 weeks.
I noticed a lump in the palm of my hand around six week ago. I don't know why I noticed it - I think I felt a pain in my hand and I remember sitting on the sofa and feeling the palm of my hand only to find a definite lump. I immediately googled 'lump in palm of hand' to see if I could come up with any suggestions as to what it might be, and pretty much instantly found myself reading about Dupuytren's Disease.
This did not sound particularly good, and looking at some of the images did not help, hands with fingers curled into the palm, white cords running across their palms. I fitted the bill - small, pea sized nodule in the palm of my right hand, under my ring finger. Not painful unless I applied pressure to it. Reading on, it seemed that early diagnosis would be key to a better prognosis, so I made an appointment to see my GP in a few weeks time.
I told my GP I had googled the lump, and he immediately suggested Dupuytren's, though told me that he hadn't seen it at such an early stage as this. He seemed sympathetic to a degree, but told me there was not much to be done until it started to cause me problems. I asked about an ultrasound: he thought about that for a while, and when I told him that I play the piano - not for a living, but as a reasonably accomplished musician - he said it wouldn't hurt to get an ultrasound and that he would request one for me. He told me it would not be marked as urgent, and that they may refuse to see me, on the grounds that it wouldn't make any difference to my treatment. I left feeling a bit flat.
Not one to sit around and do nothing, I got back on Google and started looking at clinical trials. I quickly found the RIDD trial in Oxford which appeared at be at recruitment stage, specifically for people with early DD, so I tapped off a quick email asking for more info. They got in touch very quickly and we arranged for me to go to Oxford last week and be screened. I met Cathy Ball - a hand therapist - and Professor Nanchahal, a hand surgeon, both of whom were very knowledgable about the disease. Professor Nanchahal confirmed that it almost definitely is Dupuytren's, and explained a bit more about the condition. He told me it was impossible to speculate on the long term prognosis, but that it does tend to be more aggressive in those under the age of 50. I'm 46.
And so my journey begins. I've joined two very friendly Facebook groups - one in the UK and one in the States, and I've read Professor Nanchahal's paper on early diagnosis and effective treatment. I've seen some pretty horrific photos of hands following surgery, with zig zag scars crossing the palms and fingers. I may not develop the disease to this degree, but there is a chance I might, and if it's severe, I think it can be pretty debilitating. It's not life threatening, but I suppose it could be life changing. I guess that's what I'm trying to come to terms with.
I noticed a lump in the palm of my hand around six week ago. I don't know why I noticed it - I think I felt a pain in my hand and I remember sitting on the sofa and feeling the palm of my hand only to find a definite lump. I immediately googled 'lump in palm of hand' to see if I could come up with any suggestions as to what it might be, and pretty much instantly found myself reading about Dupuytren's Disease.
This did not sound particularly good, and looking at some of the images did not help, hands with fingers curled into the palm, white cords running across their palms. I fitted the bill - small, pea sized nodule in the palm of my right hand, under my ring finger. Not painful unless I applied pressure to it. Reading on, it seemed that early diagnosis would be key to a better prognosis, so I made an appointment to see my GP in a few weeks time.
I told my GP I had googled the lump, and he immediately suggested Dupuytren's, though told me that he hadn't seen it at such an early stage as this. He seemed sympathetic to a degree, but told me there was not much to be done until it started to cause me problems. I asked about an ultrasound: he thought about that for a while, and when I told him that I play the piano - not for a living, but as a reasonably accomplished musician - he said it wouldn't hurt to get an ultrasound and that he would request one for me. He told me it would not be marked as urgent, and that they may refuse to see me, on the grounds that it wouldn't make any difference to my treatment. I left feeling a bit flat.
Not one to sit around and do nothing, I got back on Google and started looking at clinical trials. I quickly found the RIDD trial in Oxford which appeared at be at recruitment stage, specifically for people with early DD, so I tapped off a quick email asking for more info. They got in touch very quickly and we arranged for me to go to Oxford last week and be screened. I met Cathy Ball - a hand therapist - and Professor Nanchahal, a hand surgeon, both of whom were very knowledgable about the disease. Professor Nanchahal confirmed that it almost definitely is Dupuytren's, and explained a bit more about the condition. He told me it was impossible to speculate on the long term prognosis, but that it does tend to be more aggressive in those under the age of 50. I'm 46.
And so my journey begins. I've joined two very friendly Facebook groups - one in the UK and one in the States, and I've read Professor Nanchahal's paper on early diagnosis and effective treatment. I've seen some pretty horrific photos of hands following surgery, with zig zag scars crossing the palms and fingers. I may not develop the disease to this degree, but there is a chance I might, and if it's severe, I think it can be pretty debilitating. It's not life threatening, but I suppose it could be life changing. I guess that's what I'm trying to come to terms with.
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