Rare Disease Day 2012

Elliot on the top of a snow hill

After a long waiting the winter finally arrived to Stockholm for a couple of weeks, but now it seems like we're heading for springtime.

At our last visit to the hospital Elliot met a pshysioterapeut and last week we met her again and this time Elliot did some exercises that he enjoyed. He also got some exercises to do at home.

From now on it is the pshysioterapeut that will handle the 6-minutes walking test and she pushed Elliot (in a positive sense) to preform really well and he walked 455 meters! Unfortunately the saturation and pulse meter was broken so the pulse had to be taken manually. We have also met Elliot’s doctor for the usual examination (EKG and cardiac ultrasound) and the doctor couldn't see any changes, which we consider positive.

Elliot with physioterapeut

The day after tomorrow it is Rare Disease Day, but the Swedish patient association for PAH, which I now am chairman of, will not arrange any event. There has been a lot of administration with the association and not enough time to prepare. But I will attend a conference arranged by the association Rare Diseases Sweden on February 29.