Today is WORLD APS DAY!
As you know, my husband had APS. He’s been diagnosed since 2004. It’s been a rocky road and pretty scary at times, but we can’t look back and can only live in the now and hope for the future.
2004 was the year that changed our lives forever. 2005 is the year when we started using that change for good.
In 2005, myself, my husband and our new friend (and fellow APS patient), Tina turned a support forum and informational website into a brand new non-profit dedicated to bringing awareness to APS and education and support to APS patients.
My first priority was to make sure our website and online support forum was informative and honest. I didn’t want another APS patient to be as lost as we were when my husband was diagnosed. I was lucky to find that first forum on Delphi and Tina to point me in the right direction.
I thank God everyday for bringing her into our lives. I wish more people would try to get to know her, because you’d see the wonderful person she is. She’d literally give you the shirt off her back.
I really hope that the APSFA has helped people learn more about APS – the real APS, not the “take coumadin and you’re cured” APS. To me, that’s the most important thing because APS is not a bed of roses. It IS life threatening. Many people die from it, and sometimes they don’t even know they have it before it’s too late.
I have met some of the most amazingly strong people during the past 5 years. I don’t know how people live with being so sick each and everyday. I guess you just get up and do what you can. I don’t know if I could do it. Especially those who don’t have great care and who are basically dismissed by their doctors or even by their friends and families.
Unfortunately, we’ve also lost some people as well – nature of the disease, I guess. It’s hard though because I have so many friends who have this disease and it hit close to home when someone passes. Way too close to home.
I wish patients got better care. I wish they got taken seriously.
Thank you to everyone who has supported the APSFA over the past 5 years. Everything we have done we do for each and every one of you. You are all in my thoughts and prayers on a daily basis. Keep fighting and keep spreading the awareness! Together, we can get the word out!