TWO LIVES, RARE ILLNESSES, AND THE SHARED COURAGE TO KEEP GOING

Joven, a respected pioneer in the Philippine public relations industry. Her passing on Oct. 17 at the age of 76 drew attention not only to her lifetime of professional accomplishments, but to the rare and devastating illness she fought: Anti-MDA5 positive amyopathic dermatomyositis complicated by rapid interstitial lung disease.

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Let's unpack that in simpler terms:

Dermatomyositis is an autoimmune disease involving inflammation of the muscles (myositis) and skin (dermato-). "Amyopathic" means the muscle weakness may be mild or absent, yet there are serious complications.

The "Anti-MDA5 positive" subtype is very rare and known to be associated with rapidly progressive lung disease (interstitial lung disease, or ILD). Basically, the tiny air sacs of the lungs become scarred, reducing oxygen exchange, causing rapid decline.

"Rapid interstitial lung disease" means the lung damage progresses quickly — and in the case of Susan, the diagnosis came late enough or progressed fast enough that treatment could not avert the fatal outcome.

Her illness shows us how immune system dysregulation can manifest in surprising and aggressive ways. It shows us that even women in their 70s - with a lifetime of achievement - can be felled by diseases that many people have never even heard of.

WHY THEIR STORIES MATTER