Pregnancy and Parenting with Arthritis Study by the Canadian Arthritis Patient Alliance
Since being diagnosed with RA, the biggest challenges I have personally faced have all been related to pregnancy and parenting. It was back in 2011, before I was even married, that I first altered my RA treatment so that I could consider a safe pregnancy in the future. But while my rheumatologist was always extremely supportive of my desire to start a family, I wasn’t able to find much other supportive, optimistic information on the subject of RA and pregnancy. Most of the information I was able to find at the time was rather vague and slightly discouraging. And, aside from a book I had to order all the way from Australia and one personal blog, I wasn’t able to find many personal success stories either.
As a result, I felt very alone during my first pregnancy and the subsequent difficult transition to motherhood. Though I had a lot of friends who were new mothers also, none of them could relate to the specific challenges I was facing because of my arthritis. That’s one of the reasons I decided to write the RA Pregnancy Chronicles – so that other women living with arthritis wouldn’t need to feel as alone as I did when facing such life-changing decisions.
As this subject has become one of particular importance to me, I was very excited to “meet” Laurie Proulx via the magic of the internet! I learned that she also faced difficulties during her path to motherhood with arthritis. In particular, during her second pregnancy she suffered a major flare in her cricoarytenoid joints, which control the opening and closing of the vocal chords. This flare impacted her ability to breathe, resulting in an emergency C-section for her son and a tracheostomy tube for her.
In part because of her own experiences with pregnancy and arthritis, Laurie has been leading the pregnancy and parenting with arthritis project for the Canadian Arthritis Patient Alliance (CAPA), of which she is a member of the Board of Directors. In 2015, the project launched a survey to identify patient information needs as it relates to pregnancy and parenting with arthritis. The results of the survey provide some important empirical data on this subject.
The most significant concern identified by patients was medication safety during pregnancy and breastfeeding. This was followed by concerns about how to deal with fatigue, flares, and the physical care of children, particularly during the newborn to age five time period. The data indicates that patients with arthritis who are considering pregnancy and parenthood have a high need for information – but unfortunately access to and reliability of this information is currently quite lacking.
The results of the survey were presented through various posters at the Canadian Rheumatology Association meeting; the International Conference on Pregnancy, Reproduction and Rheumatic Diseases; and the Canadian Association for Health Services and Policy research. Going forward, Laurie and the other members of the project hope to use the data to create educational resources to assist people living with arthritis when considering pregnancy and in carrying out their role as a parent. Because I have personally experienced a need for such resources, I am very excited to see how this project continues to develop!
If you are interested in participating in this project as it moves forward, please contact Laurie at: email@example.com
When was your last flare?