New Friends

Bad things happen. And not that we want bad things to happen to others but there is some comfort to be found in knowing that you're not the only person facing a particular challenge.

Finding the Erdheim Chester Global Alliance has allowed me to connect with other ECD patients around the world, and for this I've been grateful. And I'm so very thankful for the efforts of the Alliance volunteers who maintain the website , raise funds for further studies, provide us with a forum to communicate and much more. Especially the "much more" part - a special thanks to Kathy who is always there to listen and offer suggestions as we navigate the maze of dealing with a rare illness.

Here comes what could be a very long story, but I'll keep this short. In the last week I've connected with two ECD families, one about a five hour drive away and one about a ten minute drive away. The first diagnosed in the last couple of months, the latter in the last two weeks.

I was floored. Here are two families that face the same Ontario health system, in some cases the same hospitals (however not the same doctors, but we'll be working on making some connections between our medical teams!)

Of course I wouldn't wish this illness on anyone, but there was elation in finding nearby "teammates" in this challenge. Last weekend I even met the wife of the patient who lives very close by and we hope to get our families together soon (and the one further away promises to be in this area later this year).

I'm excited about connecting with these two families, and we've committed to working together towards getting drug funding (we're all facing the challenge of getting help paying for Kineret) and other issues that might be unique to furthering the cause for ECD for patients in Canada.

On the subject of Kineret, I'm well used to the shots now. A nurse from Biovitrum (the maker of Kineret) called this week to check on me and gave me some very useful suggestions for making the injections a little less painful.

Here's the dirt.
After six weeks of treatment my joint pain has greatly diminished to the point that I'm walking quite normally again.
Bone pain is still there, but less frequent. When it does come it seems sharper, but I'm concentrating on the "less frequent" part!
The cardiac pain has still been a bit of a challenge. Today is the first day in about two weeks where I've not felt it (I hope I haven't jinxed myself, still about six hours to go!) The pericardial rub is still going strong, although my doctors feel that it's less widespread across the heart and concentrated more in one area.

Still very optimistic about this trial!