Name :     Kirsi Tuuliniemi

E-mail :   kirsi.tuuliniemi@gmail.com

Adult:      Born 1967

Location:   Tampere, Finland

Area(s) affected:   Right leg and foot

Personal History:

I had melorheostosis diagnosed in Orton foundation early 1990 in Helsinki but after I moved to Tampere the Doctors in Tampere university hospital just laughed at that diagnosis. But when  read symptoms on yours website I realise that I have all of those changes that melorheostosis makes to my right left bones, joints, soft tissues and vascular disorders. Doctors in TAYS (Tampere University Hospital) believes that Arteriovenous malformation is the reason for all the changes on my right foot.

In my history I got through many useless operations. Only operations that has helped is sclerotheraphy and embolisations because at the time in my blood vascular system there had been opened connections between venous and arterial and it has inconvenience my hart. Doctors don't believe me if said that those Av-malformations makes me harth problem. But every time when i have been embolisation operation has helped my harth problems. Anyway i believe that those operations has also saved my leg.

I feel myself quite good condition. I don't need any aid on my life and i don't need to use pain pills. I'm training a lot because doctors don't be any interest on my disease and i myself knows better what makes my feeling better. My only worried is risks on AV-malformations and knowledge that melorheostosis is progressive and my better left foot and back is very overloaded and started to get symptoms also.

 

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