Jessica “Jess” Jacobs, a young but accomplished director in Aetna’s Innovation Labs and a dynamic advocate for herself and other patients, has died. She was 29, sources said.

Jacobs fought both an autonomic disorder called postural orthostatic tachycardia syndrome (POTS) and a rare hereditary disease of connective tissue called Ehlers-Danlos Syndrome (EDS). Friends labeled her a “unicorn,” based on the long odds against having two such debilitating diseases.

Jacobs died Saturday in California. She had moved back to her home town of Twain Harte, California, from Washington, D.C., in June to be closer to her family.

A tweet chat held in her memory Sunday evening had the hashtag #UnicornJess. Participants said the hashtag was No. 2 on their personal Twitter trending lists after “Bolt”; Jamaican sprinter Usain Bolt won his third consecutive Olympic gold medal in the 100-meter race while the chat was going on.

A former U.S. Department of Health and Human Services employee, Jacobs co-founded the Health IT Council in the Food and Drug Administration’s Center for Drug Evaluation and Research, according to her LinkedIn profile. She also wrote the promotional plan for the Text4baby messaging program on behalf of the Health Resources and Services Administration.

She regularly tweeted and blogged about her many hospital stays, including her poor experiences. Jacobs, a green belt in Six Sigma, once rated a 12-hour wait in the ER for a hospital bed as having 7 percent process cycle efficiency.

Jacobs was tweeting from the hospital right up until Friday about her frustrations with the healthcare system.

Infusion Pharmacy continues to irk me – you'd think they'd want to keep a patient that brings them thousands of dollars of work each week. — Jess Jacobs (@jess_jacobs) August 11, 2016

And she apparently did not expect to be dying so soon. She tweeted Aug. 2 about adopting a kitten and was planning as recently as last week on reading a new book on patient-centeredness. One chapter includes Jacobs’ story, according to editor Jan Oldenburg.

Psyched to snag a copy! https://t.co/ogfj5xOK1I — Jess Jacobs (@jess_jacobs) August 8, 2016

Jacobs was famously outspoken and humorous about her health, her medical care and the healthcare industry.

“I have an idiopathic condition. It lies somewhere between the heart, autonomic nervous system and mind. It’s a veritable no-mans land of drugs and specialists where there’s no cure and very little understanding. I’m healthy enough to have a day job advising the people that chart the course of American health policy,” she said in 2013.

Jacobs was the force behind the parody Twitter account, @FarzadsBowtie, in honor of the trademark fashion statement of former national health IT coordinator Dr. Farzad Mostashari.

She also was famously upbeat to those who knew her.

“She’d be in the hospital and she’d be texting you,” said Carly Medosch, another chronically ill, activist patient, who became fast friends with Jacobs when they discovered they worked a block apart from each other in 2013. “You almost would forget that she was sick,” added Medosch, a speaker at MedCity News ENGAGE in 2015.

“She was always thinking of other people,” Medosch continued. Medosch said she received care packages from Jacobs even while Jacobs was suffering from poor care. “She was this superhuman.”

Medosch was with Jacobs often during the latter’s many disappointing and frustrating healthcare episodes, and saw the struggle firsthand, including Jacobs’ personal vigilance about preventing central-line infections. But Jacobs was not afraid to share her experiences with the world, as some of her final tweets illustrated.

This one from July 2015 was particularly telling.

Jacobs often discussed her disappointment with her care. She was particularly dismayed — but darkly humorous — about her inability to find someone to take charge and coordinate that care, the lack of interoperability of health information systems and lots of little things that form the patient experience.

Jacobs also struggled because her healthcare providers could never seem to find the right medications to treat POTS and EDS, and because some didn’t even know anything about either disease. (Author’s note: I can assure that this is a real problem, because my father had another rare, dysautonomic disease called multiple system atrophy, and ran into similar problems navigating the healthcare system.)

In 2014, Jacobs came right out and told her primary care physician about that doctor’s failings. She shared her messages on her blog:

By telling me that my condition is complex and stating that I should just see additional specialists, you are surrendering. And not even surrendering to anyone in particular – your referrals are not likely to materialize for months. I’ve been living in my friend’s guest room since being discharged from the hospital a month ago because it’s unsafe for me to live alone. I need help now, and, as these specialists are unavailable to provide the care, my primary care physician should provide it. So, this leads me to ask: If you are not willing and able to help me, who in your practice is?

Medosch said that Jacobs actually made sure all her doctors were in the same health system in the Washington area, so her records would, in theory, be accessible to all. But they were not.

“I am a one-woman HIE, and I still have to carry my medical records with me in a big pink binder,” Jacobs said in 2013.

“Lots of hospitals let her down,” Medosch said.

Artist/activist Regina Holliday said Jacobs was the first member of Holliday’s Walking Gallery of Healthcare to pass away. “When I painted her jacket, I depicted one of the times she fell faint to the pavement. She woke to find strangers looking down upon her. She would laugh off such medical adventures and do her job and help her friends,” Holliday recalled in a blog post on Saturday.

“I will see her as a patient that the system failed to care for. I will see her struggle and I will fight for change,” Holliday said.

A tweet from Jacobs last month exemplifies her struggles.

Dad reappears and we decide this meme embodies everyone at the hospital who has no power. #DischargeDreams pic.twitter.com/jYPWBXZ2RE — Jess Jacobs (@jess_jacobs) July 15, 2016

Dr. Ross Martin, program director of the Integrated Care Network initiative for the Chesapeake Regional Information System — the health information exchange in Maryland — said there would be a gathering of Jacobs’ Twitter tribe this Saturday in Washington.

The family of Jess Jacobs is planning a memorial service Saturday, August 27 at Chapel in the Pines Church, 18580 Cherokee Drive, Twain Harte, California, at 1 p.m. Pacific time.

The family has requested that donations in memory of Jacobs go to the Walking Gallery via this GoFundMe link.

Photo: Facebook user Jess Jacobs