I try to keep an overall theme on my blog of positivity and silver linings, even in the face of difficult challenges.  However, there is a reality to this disease and a reminder of what this fight is all about.  I have determined that I’m partly responsible for keeping and honoring the memory of those whose bodies could no longer hold back the attack.

Fera’s life ended in a devastating way. A life taken too soon, without the benefit of time to tackle the challenges she faced.  I did not have the honor of knowing Fera, but her friend Petra, the author of the below quote, came to our support group desperately looking for help.  Sadly, there was nothing we, or they, or the doctors could do helped Fera in the end.

When you see me making light of things, know that this is always in the back of my mind.  When you hear me credit luck, rather than diet, exercise or medicine as the main contributing factor to my health, it is because of situations like Fera’s that makes me know that to be true.

My heart goes out to Fera’s family and friends, and to all those that slip from this world too early.

“You will always be in our hearts”

“On Sunday April 9, my dear friend Fera has died of Antisynthetase Syndrom. Today was her funeral at Bonn, with many many people. Her lungs were not able to recover and in fact none of the medicine ever made any difference to the level of antibodies in her blood. Fera has left her husband and three children behind. She was diagnosed only 3 months ago, when already in coma. Her symptoms – hurting hands- started in September 2016, about 6 weeks after having given birth to her son. She was only 45 years old. — I am grateful for having been in this group to better understand the illness. I wish you all the best and keep fighting for your health.”


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