top of page

Lorie's Story

Lorie is a medical practitioner, who prior to diagnosis of RP, had a thriving practice of 25 years.  She is now unable to continue the work she loved because RP has made it impossible for her to continue. 


At age 49, in 2013, she became ill with fever, an acute flu-like illness, and severe ear inflammation.  As a practitioner, she knew she had RP.  Her “self-diagnosis” was confirmed by a rheumatologist and pulmonologist.  Lorie had the misfortune of winning the RP jackpot of symptoms including bilateral auricular chondritis, nonerosive seronegative inflammatory arthritis, nasal chondritis, costochondritis (inflammation of the rip cartilage), respiratory tract chondritis, with tracheobronchomalacia (or TBM, a narrowing of the wind pipe and bronchial airways) and audiovestibular damage (also known as sensorineural hearing loss).


In addition, she was diagnosed with fibromyalgia, Raynaud's disease, hypermobility Ehlers-Danlos syndrome, hEDS), anemia, hypothyroidism, degenerative disc disease and erythema nodosum (nodular skin inflammation). It is not uncommon to have multiple auoimmune  diseases as well as RP.  


Sadly she has been unable to obtain remission despite trying “meds in each class of Immunosuppressant drugs.” Because of the immunosuppressive nature of  many of these medications, and the threat to her already compromised respiratory system, she must be treated with very high dose  intravenous prednisone or prednisone injections instead.  

bottom of page