Saturday, July 5, 2014

Ann's HKPP Blog

Ann Latos and I have parallel lives. She has the same form of HKPP that I do, and her mobility came crashing down as quickly as mine did a few years ago. Just as I've experienced for over 20 years now, some of her doctors, family, and friends didn't believe her illness was real.

I hope Ann never stops sharing her journey, because I know how lonely, frustrating, and despairing it is to live with this rare systemic disease. There are others out there suffering more than necessary as Ann and I have because they can't convince people to listen and care. Some patients have even died by the hands and voices of ignorant caregivers. In order to stop these senseless tragedies, all of these people, and their future generations, need us to speak out just as much or more than we need to be heard ourselves.

I don't know about Ann, but those who wish to silence me will be sorely disappointed. I will never stop talking about my life - the good, bad, and ugly. The thanks and positive feedback I have received from around the world triumphs over the false judgment, unsolicited opinions, and criticism that any skeptic has thrown at me. To those people, I simply say "Game Over". You lose. I have no doubt Ann feels the same way now that she has found the physical and emotional support she needs to continue fighting this battle.

I appreciate the MDA for sponsoring her blog. Familial Periodic Paralysis is still a widely unknown and misunderstood disease - one of the rarest forms of Muscular Dystrophy in existence. The only way to save lives and give patients a better, more independent future is if we make it known and understood, and that requires awareness. Go Ann!