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Thank you so much for your words of understanding and support. We received the diagnosis on Monday, I allowed myself to cry on Tuesday, then I started taking action on Wednesday. Feels better to be proactive than reactive for sure. Like you, we kept thinking there has to be a mistake. But having accepted the diagnosis, I'm now looking for 'centers of excellence' that will review all of my sons tests (and do more as needed) to get a complete picture of his diagnosis, long term prognosis, suggested treatment options, and a realistic plan for how a 20 year old very active male (skateboarding, snowboarding, car racing) can enjoy a balanced life. I'm afraid if too restrictive, he will not follow the plan completely and the result could be bad. I see that some of the big university research centers/hospitals have a special focus on Lupus Anticoagulant Syndrome and hope to find a good good program and have him evaluated soon. Again, thank you for response, very much appreciated!

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Replies to "Thank you so much for your words of understanding and support. We received the diagnosis on..."

Of course, I know the feeling. And the unknown is very scary. Limitations are somewhat different, life is a little different. I know flying you have to be therapeutic for a month and be okayed prior. I was very active, multitasking and took on multiple things at once. No longer, brain fog and fatigue doesn’t help but I don’t let it get in the way for the most part. Activity I believe he can do things but with precautions of course especially with INR therapeutic. Michigan state is doing a lot of current research on APS if it interests you. UK has most information. You’re doing amazing and on the right track. With a mom like you he’ll be just fine. Stay positive and enjoy him and take it easy. I was just diagnosed in August. I’m learning to just go with the day and enjoy each moment. Can’t focus on what we can’t fix tomorrow, because tomorrow hasn’t arrived. Best of luck and many hugs your way!