Inside antiphospholipid syndrome: a patient's personal health journey

Written by Lori Hirshman and originally published by the University of Michigan Medical School

In 1994, Mark Hall was diagnosed with antiphospholipid syndrome, also known as APS.

At the time, he was in his early 30s, living life to the fullest – racing cars, playing basketball, and thriving in a high-powered career in health care sales.

But everything changed when Mark began suffering from unexplained blood clots in his lungs, legs, and heart. 

Despite these challenges, he remained resilient.

Mark continued working as a vice president at Blue Cross Blue Shield until his health began to deteriorate dramatically in 2018.

Fatigue became constant. 

His blood counts dropped without explanation.

Pain, particularly in his hands, became relentless.

SEE ALSO: Antiphospholipid antibodies may increase heart disease risk in healthy people

It was then that a family member encouraged him to seek help at University of Michigan Health - an act that would ultimately save his life.

Under the care of an expert multidisciplinary team -- including Yu (Ray) Zuo, M.D., Edward T. and Ellen K. Dryer Early Career Professor of Rheumatology, assistant professor of internal medicine, and APS program associate director -- Mark was finally diagnosed with catastrophic APS, a rare, life threatening complication that affects fewer than 1% of APS patients.

This severe condition causes widespread, rapid clotting that can impact multiple organs simultaneously.

For Mark, the diagnosis brought both clarity and a sense of urgency.

Living with APS meant a complete transformation of his daily life. 

Once constantly on the move, he now had to vigilantly monitor his health and avoid infections due to a compromised immune system.

The disease forced Mark to retire early, and he faced cognitive challenges and physical limitations that made even a full work day impossible.

Yet, through it all, Mark never lost hope.

He credits his survival, and his quality of life, to the compassionate, coordinated care he receives at U-M Health and the Michigan APS Program.

SEE ALSO: Helpful enzymes vanish in many patients with antiphospholipid syndrome

“Access to comprehensive care at University of Michigan Health, with the specialists coordinating my treatment, has been pivotal," said Mark.

"It has not only stabilized my condition but also improved my quality of life. The entire team has been instrumental by personalizing my medical care, which was crucial to managing my catastrophic APS."

Today, Mark is redefining what it means to live fully with a serious diagnosis.

"You can live a normal life with APS by adhering to your doctor’s advice, prioritizing your health, and surrounding yourself with supportive people,” he said.

“You can get through it, and there will be days you forget you are even living with it.”

SEE ALSO: Unveiling potential diagnostic, treatment target for APS-related thrombocytopenia

With the support of his wife, family, and friends, he’s found a new purpose -- rescuing and caring for neglected animals.

He recently founded a local fostering and shelter organization, channeling his energy and compassion into giving vulnerable creatures a second chance, just as he was given.

By sharing his journey, Mark hopes to raise awareness about APS, to push for earlier diagnoses, better treatments, and increased funding for APS research and patient support.

“Contributions to the APS Program have a direct impact on saving lives and improving the quality of life for people with APS," Mark said.

"It is an investment in hope, health, and future advancements.”

Learn more about the APS Research Labs, the research arm of the APS Program, who are working to advance the understanding of antiphospholipid syndrome and to identify new treatments that are more personalized and proactive.

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