Diagnosed with Systemic Lupus at 37 years old
Richard went from running 100-mile races to periodically collapsing and not being able to stand in his own home. At 37 years old, Richard was diagnosed with systemic lupus by his local rheumatologist, who – in Richard’s book – “wears a cape. He’s truly my hero.” And not only is Richard thankful for his relationship with his rheumatologist, he is grateful for the accessibility to rheumatologists within his community – an issue that many people face who live in areas where there is a deficit in the field. Richard’s positive experience and relationship with his rheumatologist led him to found his own not-for-profit organization, the Local Lupus Alliance. Through his organization, he has taken compassionate care to a new level by raising money and advocating for lupus patients who are in need.
Richard’s Story: The Physical and Financial Challenges . . . and Everything in Between
The struggles of everyday simple tasks for Richard range from taking walks, to holding onto a beverage with a tight grip. The degree of his limitations varies from day to day. Richard also emphasizes the need to conserve his energy for tasks and events that will require a bit extra. If he knows he has a high-energy schedule the following day, he’ll decline social events so he has enough energy to begin the day and participate in his scheduled activities.
While physical challenges are tough, it’s the financial burden that impacts and shifts his life and family dynamics. Richard utilizes much of his retirement funds to pay for exorbitant costs related to his condition and at times he neglects necessary treatments due to the hefty cost.
Richard’s Window of Opportunity: The Importance of Compassionate Care
Richard’s rheumatologist demonstrates one of the most important qualities in terms of patient interaction: compassionate care. Living with the condition for several years has allowed Richard to develop a long-lasting relationship with his rheumatologist, whom he views as a hero. “He truly cares for me as a patient, but more importantly, as a human being. Each patient deserves that level of compassionate care,” Richard explains.
Richard’s personal passion that developed through his experience has led him to found his own not-for-profit organization, the Local Lupus Alliance. Through his organization, he works with board members and outside contributors to assess need and gift items to patients with lupus. Once the gifting program ramps up, families will be gifted with wheel chair ramps, $100 Visa gift cards for meals during inpatient hospital stays and various other items and services. Admirably, Richard appreciates being able to give back and make a difference despite the challenges he faces. And the treatment and dedication he receives from his rheumatologist inspires him to share the same type of compassion with others.
Richard is a 41-year-old living with systemic lupus, with a positive outlook on his diagnosis and the future of rheumatology. Through education and awareness, Richard hopes his story will help others understand the disease and provide support to patients going through similar challenges.