Klippel-Trenaunay Syndrome
I am who I am thanks to it!!!
I have been doing a bit of Swedish KTS Network "work" this morning. The network has kind of avalanched into being a bit more forefront quicker than I thought! We have allready been invited to our first international congress! We are invited to have our own information table; to inform about our network but alos about Klippel-Trenaunay Syndrome and life with a malformation as inovacive as KT.
I have been e-mailing alot this morning; trying to get things going as we have quite alot to do before we can even feel remotely calm about our task. What we need now is:
- A nicely designed web-page that carrys all the informatione needed to let people know about our network and about KT, as well as about other vascular anomaleties.
- A loggo!!!
- To register our organisation so that we are allowed to recieve donations without needing to pay tax
But as I always say, one thing at the time! No one benefits from a gastric ulcer!!
It's very fullfilling to get this network going! It feels wounderful to be able to use my "bad" experiences to something positive, to be able to help others so that they wont have to experience the problems that I have! I love the feeling of being able to help, guide and give advice. The feeling of helping another person get a better quality life means so much.
My dream now is that the network will grow; more patients with vascular malformations and vascular anomaleties will find therir way to us! That we will be able to get organised in such a way that we can be a help to doctors when it comes to knowledge about Klippel-Trenaunay Syndrome. KT is such a rare congenital disorder and that makes it hard for physicans to know what to do to help a patient.
KT is a syndrome and the word syndrome means that it is something "quite like". To be diagnosed with KT you need to have at least two of three anomaleties:
- Portwein stain/s or birthmarks
- Malformations in blood- and lymphatic system
Rare cases might even have malformations in the aorta or abnormal conections between veins and aorta - Enlarged soft tissue and/or hyperthropy
KT is very complex and manifest different from patient to patient. Some KT:ers haver very large body parts as some KT:ers does only have a slight blush of the skin that remins them of their KT. The thing with KT is that it's not only what you see that you get! The inside of a KT:ers body might look very different due to the vascular- and lymphatic malformations.
So, to let doctors know about our lives, our problems and how it is to live with KT- that is very impirtant to me!
Growing u I was told that my KT would stay the way it was for ever and ever and nothing would ever change. Now I know that that was doctors who didn't know a thing about my coindition! KT makes life a challenge! KT changes, very much so. It both grows and moves, it changes in character and gives you suprices you never thought of ever! KT is progressive.....and that makes life a bit tougher than it's ment to be.
I will make KT and the Swedish Klippel Trenaunay Syndrome Network my life challenge! I will not let KT beat me!! I will only let KT tecah me. I will take upon myself to battle the syndrome, to enlighten others about it and to make sure that no one will ever be treated by doctors the way I have been!
My hope and dream is for the network to grow and to be known among physicans all over the country! I want the network to be a trusted organisation that people will turn to, that doctors can turn to and that will be able to kickstart KT reseach in Scandinavia!
I know there is no cure, I know there is no way to survive it-
but I know there is a way to live with it!!! And I will!!!
