Mark Egly Foundation

Mark's Story

A Small Part of Mark Egly's Personal Medical History and Health Miracle

Pain

Over the last 30 years, Mark has had three not-at-fault auto accidents; two times, Mark was struck by individuals texting when driving into Mark at high speeds while his vehicles were sitting still. These three accidents resulted in multiple broken bones and injuries in his body. His right knee, right shoulder, head, neck, and back were affected. Over these 30 years, the deterioration of Mark's health status, he was told that the pain was to be attributed and related to car accidents. What is the relevance here? The significance of the unnecessary pain Mark experienced because of uncontrolled inflammation. The lack of the protease inhibitor Alpha1 Antitrypsin caused inflammation to last much longer than necessary. Neutrophils are present to fight bacteria and infection! When neutrophils are just causing inflammation, the neutrophils are just causing extended pain!

Blood Tests

  • Before the diagnosis of ATT1, Mark's blood tests always come back perfect by insurance application and annual physicals standards.
  • For 25 years, almost every physician considered Mark a hypochondriac because his blood work was always perfect!
  • With Mark's complaints of a constant cough and pain, with multiple chest x-rays over the last 30 years, they potentially should have noticed panlobular emphysema earlier; no physician saw fit to test for Alpha1 Antitrypsin Deficiency through a blood exam. That was until Mark's demand for testing for AATD because of his lifelong research and potential diagnosis of AATD in 2018. (At the time of Mark's self-diagnosis, only 8,000 individuals had been identified with AATD!)

Health Status Improvements Now for Mark with Alpha1 Antitrypsin

  • Mark is no longer bedridden, disabled, and dying quickly now, working as an active contributor to our community again!
  • Weight has gone from 149 lbs. at diagnosis time to 190 lbs. at the last weigh-in.
  • Mark's cough has resolved by at least 95%!
  • Mark's loss of lung function stopped deteriorating! His 2022 pulmonary lung function results were equivalent to his original tests at the time of diagnosis four years ago!
  • Mark has significantly reduced his sad and depressing days, considerably improving his health outlook for the future.
  • Mark has had a significant reduction in pain throughout the entire body.
  • Mark has significantly improved his physical strength and is now driven to move forward with enthusiasm for life.

What has Changed, and Why IS It Important to everyone?

  • Mark was diagnosed with Emphysema and COPD in February of 2018
  • Mark has been researching since 1976 what was killing his family for the last 150 years. After less than five days of research after his February 2018 diagnosis of COPD and emphysema, Mark asked to be tested for the Orphan Disease, Alpha1 Antitrypsin Deficiency. Mark was right in his assessment.
  • The number of people Mark has assisted with identification is staggering! Well-equipped and knowledgeable physicians will make Mark's numbers look very small soon!!
  • Health professionals can now make this diagnosis with a straightforward, simple blood test in one day; versus the current eight years and four healthcare providers, it has taken for the fortunate patients with the good fortune of being identified!

Biggest Joys for Mark to Share With Every Medical Professional

  • The saving of lives of many individuals through proper and early detection of this easily treatable condition of Alpha1 Antitrypsin Deficiency!
  • We are identifying patients to be considered for infusion therapy by our established standards for future consideration by the medical community!
  • Identification of a disease that has been needlessly killing members of Mark's family and our society for centuries because of a previous lack of knowledge and understanding of the full impact of Alpha1 Antitrypsin on the entire body!