Diagnosed with RA at 19 & Undifferentiated Connective Tissue Disease at 26
Leslie M. was 19-years old when she was diagnosed with rheumatoid arthritis and 26-years old when she was diagnosed with undifferentiated connective tissue disease (UCTD). Now 28-years old, Leslie has tackled many of life’s biggest moments with her diseases – she is a newlywed considering expanding her family – and is learning just how much her diagnosis impacts her daily life. Despite her challenges, Leslie is hopeful she will become a mother one day and seeks to educate other young women on the unexpected impact of rheumatic diseases.
Leslie’s Story: Struggle to receive a diagnosis
Leslie thought she was just a rundown college student when a nurse told her she was anemic. She didn’t feel sick, so she struggled to find a doctor who could explain the diagnosis. By the time Leslie’s joints began hurting, she had visited a gastroenologist, internist, student clinic and hematologist before being referred to a rheumatologist. Leslie drove two and a half hours to see her first rheumatologist, and has since visited five rheumatologists in 10 years. She’s experienced long waiting periods as a new patient and struggled to find a rheumatologist willing to administer her medication.
Her search has ended though, as she’s been with her current rheumatologist for three years and feels like she’s found the perfect fit. As a scientist researching structural biology and protein structure, Leslie approaches her disease with a very watchful eye as she understands the many intricacies of her diagnosis. Her rheumatologist answers her many questions, considers her quality of life when prescribing medications and is straightforward with opinions and action plans.
Tackling life’s biggest moments with rheumatic disease
Leslie was a young woman with rheumatoid arthritis when she met the man who would become her husband. In order to plan their wedding, Leslie not only consulted family and friends, but also included her rheumatologist as part of the process. Rheumatic diseases can be unpredictable – one day she feels fine and the next she feels sick. Leslie was anxious about how she would wake up on her wedding day, but her rheumatologist worked closely with her to develop a plan that left her feeling her best as she walked down the aisle.
After uniting in marriage, Leslie and her husband began thinking about the next step in their lives – having children. They soon learned that Leslie’s diagnosis would impact their ability to expand their family. There are no formal studies about Leslie’s medication and its effect on pregnancies, but her rheumatoid arthritis is too severe to temporarily stop medication. Rather than risking their baby’s health, Leslie and her husband inquired with adoption agencies but again were faced with disappointment as her diagnosis classifies her with an ‘unsuitable adoptive parent’ and most agencies won’t approve the adoption.
Leslie’s Window of Opportunity: Educating others on the reproductive issues accompanying diagnosis
Leslie remains hopeful – for herself, her family and her diagnosis. As a scientist, she trusts that research will pave the way for future generations to navigate her same struggles with more ease. She wants to use her voice to inform the medical community, and general public, about the importance of researching how medications affect pregnancy. This topic is very close to Leslie’s heart and is one that may often get overlooked, while young people continue to struggle every day.
Leslie is a newlywed living with rheumatoid arthritis and UCTD and she’s determined to not let the disease stop her from becoming a mother. Through research and education, Leslie hopes rheumatologists will find a way for her pregnancy to become a reality.