- from Arthritis Research UK

This is the topic I am going to speak about at the very first systemic sclerosis world congress which will take place in Florence in less than 2 weeks. I have been invited to speak at the opening ceremony on Febr. 11th and I am really looking forward to the world congress, to make friendships with patients from all over the world, to share experiences and bring home ideas to work with in Denmark. So far I am not nervous to stand infront of so many people, but I know that I will be when it is time to climb that stage. But I am doing it not only for me, but also for friends I have lost to scleroderma, friends I will get in the future WITH scleroderma /and without, my family, my friends. I will do the talking, but I will do it with many voices, a few patients who have told me what if means to THEM to have scleroderma. Because eventhough we have the same disease it shows its face in so many ways that it is frightening most of us.

I will not go into details what I am going to speak of. You will find the slides for my speech on Febr. 12th right here – untill then I will keep most to myself.

But I can tell you so much. I will speak not only as a patient but also as a human being who is trying to cooperate with this she-devil called scleroderma. It affect not only us but also our surroundings like family, friends and work. And if you are not aware of what a huge impact getting a rare incurable disease is and if you don’t listen 100% to your body, your doctor, your family, friends and so on… you might – at worst – fall into a severe depression. Getting a rare incurable disease is one of your hardest challenges in your life. I know – I have seen it. And I have been very close to depression myself. Sometimes even today I can see the depression in the distance and then I know that I have to work with it, so that I not end up there. Because it is tough to fight scleroderma WITH a depression. We must NOT stress our body – but it is easier said than done. Especially for us with systemic sclerosis. We always have the fear in our minds before we get to control, and medical examinations. And it is the case even though you have been told that your systemic sclerosis might be a mild case. But when it comes to it – who can tell because this is a disease with so many faces? I know that I get worried when I climb the stairs and need to catch my breath – are my lungs affected or is it bad fitness? You worry the most before you get that lung test and you are very happy when they tell you that your lungs are fine. But the moments before you have a million thoughts running through your mind. And you cannot do anything to end it – only the result can. Knowing is everything – also bad knows. At least so is it to me.

I got my diagnosis 2 years and 2 months ago. And in many ways it has changed my life. I have been forced to look upon my life with different eyes. Some things are hard to handle. But I am learning – even now and maybe for the rest of my life – that this is something I can live with, if only I listen to my body and allow it to rest when it needs it. For a person without scleroderma this is hard to understand. Who have not heard the words: “But you dont look sick”. No I dont – I am lucky that I still can bend my fingers (well, almost!), that there are no big changes in my face (there has been a few but it is so little to mention and the process have been very slow), and people dont see the types of medication I take to get myself through the day, and people dont see me when I get home and can let my mask drop because I have been hiding behind it because of that days enormous fatigue or joint pain. Why should they? I dont want them to feel sorry for me. I handle things my way, in a very different way than before my diagnosis. People learn to adapt life with what they got.

We need more awareness, we need patients to go together so that it gets a bit more easy to adress our health minister, doctors and other health personel. We have a rare disease which in bad cases can be fatal. Some die, some dont die but are very sick and some are not very affected by this scleroderma. Why is it so? Why is it so difficult to treat? It cannot be cured because it is an auto-immune disease but if it is more and more searched by scientists then there is hope for a better treatment so that we can stay focused on what really matter: Our life, and living our life just the way we want it.

And THIS is why I have accepted to go on stage at the opening ceremony – we need more awareness. This is not only a disease like many others, it is OUR disease. And it is OUR lives… We need help to fight this. And the very first systemic world congress is a very good place to start. Lets fight this thing back!