symptoms started when she was only seven years old. Her piano teacher noticed her hands were very cold and were frequently blue. She also had unexplained fevers, joint pains, and seemed to become ill after being in the sun.
At the age of 16, she developed a rash and noticed bruising on her legs that was diagnosed as thrombocytopenia. She also had chest pain, an irregular heart beat and shortness of breath. At that time, her physician became suspicious of lupus and sent her to a rheumatologist. Her lab tests were inconclusive at that time. The rheumatologist said, “You may be diagnosed with lupus someday, but go ahead and live your life normally.” Robin stated, “To some degree I was angry I hadn’t received a diagnosis at that time. However in many ways it was probably good advice, because I didn’t allow the symptoms to interfere with my goals for my career, personal life, and future plans.”
At 18 she was diagnosed and treated for Hashimotos Thyroiditis. When she was 20 she developed Sjogren’s Syndrome, another autoimmune disease that sometimes overlaps with lupus. She continued to have joint pains and then developed difficulty swallowing. She was informed her esophagus had scleroderma - like changes.
She attended Cal State University, Hayward, majored in nursing, and became a registered nurse. She worked at Alta Bates Hospital on a medical floor for eight years. During that time she returned to UCSF for her master’s degree in nursing. She specialized in the study of HIV nursing. She graduated in 1990 and subsequently became the head nurse at the Alta Bates East Bay AIDS Center for two years.
She was married in 1991. She had her first pregnancy in 1993. It was a very complicated pregnancy ending in pre-eclampsia. Her physician had to deliver her baby girl early. Her joint and chest pain became much worse.
In 1994, she started the AIDS Outpatient Clinic at Stanford known as The Positive Care Clinic. Robin continued overseeing this effort for the next four years.
In 1997 she became pregnant with her second child. She was referred to the high-risk pregnancy department at Stanford and had multiple complications due to high blood pressure, nephritis, pericarditis, and a blood clot. Their baby boy was successfully delivered when he was seven weeks premature. Because of being a preemie, he spent a month in the hospital.
Robin was finally diagnosed with lupus during this pregnancy. The disease had become organ threatening. She developed kidney involvement and was spilling protein (lupus nephritis). She also had pericarditis and pleuritis. The ANA blood test was now positive.
Robin stated “I can’t say enough about my rheumatologist. She has always been there for me. She has pulled me back from near death on a number of occasions. She has been willing to work with me as a partner in my care. She continues to try the latest approaches to deal with this disease. I wouldn’t be here if it wasn’t for her care and encouragement.”
She returned to work four months after delivery of her second child. In 1998 she noticed problems with her cognitive function and short term memory. She had difficulty remembering people’s names, had problems finding words, and trouble recalling conversations. Suddenly she developed a weakness on one side of her body and was tested for a stroke. The doctors diagnosed her condition as lupus cerebritis, which has been her most challenging medical problem with lupus. She struggled at work and noticed she had great difficulty calculating medical dosages. It was at this time she realized it was unsafe to practice as a nurse.
Recognizing that what was happening to her was a long term struggle, she accepted the fact she had to retire at the peak of her professional career. This decision was extremely difficult to make. The HIV program she created was very well received, she thoroughly enjoyed her working relationships, and found the work very rewarding. She felt like she was really contributing to society. Very reluctantly she retired in 1998.
Her doctor aggressively treated her with Cytoxan and Prednisone. In addition to the cerebritis, in 2001 she developed lupus myelitis. With the latter condition, she develops severe pain in her spine and a rapidly progressing numbness that starts in her feet, and then the numbness progresses up her legs and continues through her torso—sometimes reaching her face. This process is also associated with weakness and a paralysis that must be treated aggressively and quickly. Sometimes she has not been able to feel anything from her neck down and has barely been able to walk. She is not always able to drive. Her sensations are not like they used to be. After treatment, some of the nerves regenerate themselves. She discovered this complication seems to be triggered by an infection. The medications she takes to control lupus, Prednisone and two transplant medications, often increase her susceptibility to infection.
She takes monthly infusions of immune globulin (IVIG) to prevent the myelitis from returning and Rituxan to prevent lupus flares. She takes 20 prescription medications regularly which helps to manage the complications of this disease. Her health varies from day to day.
She is now a stay-at-home mom and her two children, now 13 and 9, who keep her very busy. When her health permits, she loves to play tennis and sail. Her family has a sail boat and they all enjoy family outings on the Bay.
She first became involved with the Lupus Foundation of Northern California (LFNC) in 1997—shortly after she was diagnosed with lupus.
Robin commented, “The LFNC has been a valuable resource for lupus patients in numerous ways—as an educational resource and for providing a personal support system.” Robin attended the LFNC education classes and conferences, borrowed from the video lending library, visited their website, and ordered books and medical articles. “Their quarterly newsletters have been invaluable,” she stated. She also became very involved as a volunteer with the Foundation; assisting at conferences, as a nurse at the 5K Run and Walk, as an instructor for the education classes, and she has helped at occasional health fairs. She currently is a co-leader of the Mid-Peninsula Lupus Support Group.
Robin concluded, “I have a very supportive family who helped me get through all the hard times. I am fortunate to have a wonderful community of close friends and neighbors who have been very supportive as well. The Mid-Peninsula Lupus Support Group has helped me to realize I am not alone. I couldn’t have managed without them”.