Help for Jeremy Johnson and family

In January, 2022, Jeremy Johnson, husband, father to seven and associate professor of art education was diagnosed with a rare autoimmune disorder called Relapsing Polychondritis. The disease destroys cartilage anywhere it is present in the body including the ears, eyes, nose, airway, chest wall, joints, and heart. There is no cure, only treatments that slow the progression. Since his diagnosis, Jeremy’s team of doctors has been unable to find a treatment that works sufficiently and his health has continued to deteriorate. He has faced several surgeries and hospitalizations and takes a drug regimen of including weekly chemotherapy drugs, monthly infusions and more than a dozen daily medications. Since his diagnosis, Jeremy has experienced vision loss, skin breakdown, voice issues, cardiac issues and loss of mobility. He now uses a walker or wheelchair to get around. His medical condition caused him to take a leave of absence from his work as an art professor in January. The family has incurred tens of thousands of dollars in expenses related to Jeremy’s medical care and modifications to their home and vehicle to accommodate Jeremy’s needs. Because RP is such a rare condition, many of Jeremy’s treatments are considered experimental and are not covered by insurance.

In June, Jeremy, his wife and his father will travel to Philadelphia to meet with a doctor at the University of Pennsylvania who specializes in the treatment of Jeremy’s disorder in hopes of finding better treatment options. The medical expenses and travel to the appointment are all at the expense of the family. Your support is greatly appreciated as this family navigates this difficult situation.

UPDATE August 18, 2023

Thank you to everyone who has supported Jeremy and his family as his journey with RP has progressed. Jeremy visited Penn Medicine in Philidelphia in June and the team there had some possible pathways to explore including increasing the frequency and dosage of his medications, looking into palliative pain management, starting vestibular therapy and adding some other specialists to his care team. He underwent surgery on August 7 to address some deteriorations of tendons and cartilage in his left leg, however, the surgeon encountered more damage than he was anticipating and is not confident the surgery will work. Jeremy also learned that the right knee replacement that he just had in February is already beginning to fail so, he does not have the strength to walk anymore.

Currently, he is in a wheelchair full-time and requires assistance from Lisa or the kids to get around the house or go to work. Due to recent vehicle issues, the family is not able to carry Jeremy's electric wheelchair. through it all, they remain strong and hopeful.

Thank you again for your generous support of this family.