Yes, I know that this is a disease that affects mostly 70+ year old men. I thought at least I would be able to find one other person on a forum that was going through it at my age, preferably a female but hey! I won't get too picky. seriously every single person on these forums was OLD. All the information I can read about my disease only really pertains to people over the age of 50 or for little kids who have a different form of MDS.
THERE ARE NO MATERIALS FOR YOUNG ADULTS!! ok, yes I should know this and expect this since my Dr. has only seen a handful of patients that are around my age, but I would think I would be able to find something/someone (one little tidbit) online. I mean come on the internet is HUGE! (hahah).
So those are my frustrations right now and maybe I can do something to change the resources out there.
My searches and internet roaming was not a complete loss. I found a lot of websites that support Young Adults with any type of Cancer like Stupid Cancer.
I also found that the Leukemia Lymphoma Society (LLS) , which cover MDS because not sooo long ago MDS was called Pre-Leukemia, is the organization that has Team in Training for a bunch of 1/2 marathon runs etc. They also have a big walk in October called Light the Night Walk. So everyone put October 26th into your calendars as I am going to make a team :) and we are going to wear shirts like this:
aren't they amazing? I need one of these shirts like NOW and if you want one (they come in all different colors for all different cancers!) go here Fuck Cancer Shirts
So in the end my searches helped me find a lot of positive things out there but that underlying frustration is still there!
LLS is a great group. They might know someone in your age range. They will also help financially with your car parking expenses etc.
ReplyDeleteI was widowed at 36. I searched for other young widows as myself and finally gave up and got on with life as I thought it should be. I understand your frustration.......Hang in there.