Hi clover. Would love to add you over. We have 326 people now with approximately 15 in Australia. It is private and not open forums for the public to see. I did send you a private message in response to your msg to me.
Lisa Schwart
Tulsa, Oklahoma
You can find me on Facebook

Hi again clover, my daughter was diagnosed with SM back in 2008 when she was 14. Unfortunately her as has been very aggressive as well. She's been on all the meds that have been tried for SM and even some on a trial basis. She's had 18 abdominal surgeries for multiple bowel obstructions and the SM calcifications and masses have also affected the right side of her female organs and her right ureter. We live in Oklahoma and have been going back and forth to Cleveland Clinic in Ohio for just over a year now with the bowel transplant team. She'll be listing for a small bowel transplant. Unfortunately, she developed complications in the last 11 hour abdominal surgery and has been in congestive heart failure. We recently Petitioned the FDA for 2 new drugs which we were able to obtain and she's been making somewhat of an improvement with them. Once she has cardiac clearance she'll be having another abd surgery in Cleveland.. she's been on TPN feeds for several yrs now. We haven't given up yet. Have many Australians in our group can help network you with hopefully for other doc's near you. Talk soon. Lisa Schwart, Tulsa, oklahoma.