My daughter has Klippel-Trenauany syndrome with another blood clotting disorder (anti phospholipid syndrome) as well and until she was in the 5th grade she had no pain and no problems but now she has pain everywhere and was just told by a pain clinic that because she is only 22 she should not have any pain in her back. The last year she has a blood clot to the heart, juglar vein, arm, bladder and one to the kidney that killed half of it. She has been to many specialist and they say there is nothing they can do. the blood clots are stable but she has been to physical therapist for the pain and they say her hips are out of line , I know she has the leg length and has had surgery for that and her vein flare up so bad on the leg that the port wine stain is on somedays she cant walk. I need some advice and new Dr's/hospitals to go to that can help.