I've connected with several MSUD parents during the past week through Facebook, some as far away as England and Australia. I've always felt like the MSUD community almost feels like a family. When you're facing a serious and rare disease like MSUD, you can feel isolated. No matter how much your family and friends learn about MSUD, there just isn't any way for them to know exactly how you are feeling. Then you speak to acquaintances and strangers and their eyes just glaze over when you start using terms like leucine and DNPH. There's a connection with other parents who also living with the same challenges that you are. They "get it".
That's always been my favorite part of the MSUD support group's symposiums. Although the doctors and researchers who speak are informative, it was talking with the other parents that I've loved. Unfortunately, we will miss this year's symposium. It is in Chicago, and that's just too far to be from home, let alone Pittsburgh, in case "the call" comes. Hopefully we will be able to attend the next one, two years from now, and Anna will be able to proudly show off her transplant scar.
That's always been my favorite part of the MSUD support group's symposiums. Although the doctors and researchers who speak are informative, it was talking with the other parents that I've loved. Unfortunately, we will miss this year's symposium. It is in Chicago, and that's just too far to be from home, let alone Pittsburgh, in case "the call" comes. Hopefully we will be able to attend the next one, two years from now, and Anna will be able to proudly show off her transplant scar.