Sunday, 14 June 2015
When Ledderhose becomes life-threatening
You go on the internet today and search for Ledderhose or plantar fibroma and you will come across a lot of different websites, mine and the Dupuytren's Societies included but you will also come across a lot of websites that say this condition is not even painful.
Dupuytren's and Ledderhose are not life-threatening conditions but they are quality of life-threatening. Sure this condition is never going to cause your heart to stop beating or your brain to have memory loss but does that mean that this condition is not life threatening? What about the mental side of things.
This post is sparked by a recent conversation I had with a lovely lady from the UK. She contacted me through the blog e-mail a few weeks ago and I replied straight away saying that there is hope and there are still things to try. Over these weeks we have been trying to arrange a time to have a phone call, some patients prefer to chat that way and it is certainly easier than e-mails once you actually get on the phone. Anyway we finally got round to talking last night and one of the first things she said is thank you so much for taking my call and thank you so much for replying to my e-mail, you literally saved my life.
We then talked for around 30 minutes, me sharing my knowledge and experience and talking through the different results from the patient survey and how they related to her experience. She went through what is happening to her now and how the condition is causing her to have suicidal moments, times when you can't see a way through. I am lucky I never got to that point myself but you know what I could certainly see where she was coming from and this can be hard for people who have not experienced anything like this to understand.
Imagine that you are an active person, you enjoy being out and about and going for walks and suddenly there is a pain in your foot. Over the next weeks or months, perhaps even years the pain in your foot builds to the point you can't really walk. Doctors tell you that there isn't anything they can really do, the pain may get better by itself over time, no guarantee though. The only option freely available to you is surgery, it is a tumour after all but no the doctor (rightly so) says that it is not a great option and only recommends cutting it out as a final resort, you are thinking I can't walk when does that option really become available. You ask around and nobody else you know has even heard of the condition let alone gone through something like it, the condition is ultimately rare (at least in such as painful state) and you struggle to connect with others in your position, limited research is being done and all you can see ahead of you is years of pain and misery. You start taking pain killers, you try everything and although nothing really works things like codeine at least give you some sleep, a rest from the night twinges of pain that have you waking up with a jolt. Drugs like codeine are strong, you aren't supposed to be on them for long but coming off of them seems like a nightmare, you have to go through constant pain again and you find yourself thinking can I keep going.
I am lucky to have had so many friends and family around me, willing me on and being there fore me night and day, we now have the amazing internet and facebook with groups and forums of other patients who are not only there to share their experiences but also to give you hope, support and commiserate with you and let you know you are not alone. These groups are so important that I am not even going to try and describe how important they are, I congratulate everyone that participates in these in any way shape or form. Patients on these groups might share with you their experience, like me of going from walking to stick to running and you think that could be me. The treatment you want costs thousands of pounds, at least it is not ten's of thousands. Everyone out there needs to realise that there is more than the actual impact on your body there is the mental impact as well. If your feet are bad it can really take your life away, you can't so so many things that you could do before, as I said above sometimes you can't even sleep without pain.
Here is to hoping that one day we will have a cure and if not then hopefully we at least have patients being aware of and having access to all the different treatment options that might help them and with support so that they never feel the need to have suicidal thoughts. In fact both my wife and I are going to run the Brighton Half Marathon next year and we are going to run it for http://www.mind.org.uk/
Some things matter, things like approaching 200,000 page views, nearly 400 facebook likes, travelling to Groningen to present at the Symposium although nice do not matter, what matters is connecting with the patients that really need a helpful word from someone who has been there. I know the blog has helped hundreds, if not thousands of people but now I know it has actually saved someone's life, I cannot express how amazing this is and I know how hard it must have been for the patient to share that information with me..