Guest post: Pregnancy and Parenting Survey
Are you a parent with arthritis? Do you have arthritis and want to have a family, too? Today’s guest post is by Laurie Proulx from the Canadian Arthritis Patient Alliance (CAPA). She is the lead on a project about pregnancy and parenting with arthritis. CAPA has created a survey to find out what kind of information people with arthritis need about pregnancy and parenting with the disease. To find out more and take the survey, please visit the CAPA pregnancy and parenting survey page. Please also share this important survey to as many people as possible can participate.
Take it away, Laurie!
Please tell us a little about yourself, Laurie.
I can hardly remember what it was like to not have RA. I was diagnosed with Juvenile Rheumatoid Arthritis (now called Juvenile Idiopathic Arthritis) when I was 14 years old, 24 years ago. It was a long, hard road to diagnosis. I recall my Mom having many an argument with my family doctor in order to merely get a referral to a rheumatologist. The uncontrolled RA took me from my life as a typical teenager – playing sports, dancing and playing piano – and moved me into the world of doctors, physiotherapists, hospitals, lab tests and constant pain. These challenges helped me adapt to all that life has thrown at me. Despite my illness, I completed a university degree, went on to marry a wonderful man, I work as a human resources professional and I’m the mother of two children – Claire (8 years old) and Charlie (3 years old).
How long have you been involved with CAPA and what do you do there?
I’ve been a member of the CAPA Board of Directors since 2006. I had hardly ever met a person living with arthritis prior to this time and I was so thrilled to meet so many kindred spirits. I’ve been involved as a consumer in research workshops and projects. I’ve participated in numerous consultations with Health Canada ranging from the withdrawal of Vioxx from the market, drug risk communications, drug shortages and pediatric and maternal drug safety. The voice of the patient – as provided through CAPA – is very much needed to help guide policy makers in making the right decisions.
With the support of CAPA, I’m leading the pregnancy and parenting with arthritis project. The first phase of the project is the launch of a survey to identify patient information needs as it relates to pregnancy and parenting. The ultimate goal is to develop an educational resource for people living with arthritis.
Your latest initiative is a survey about pregnancy and parenting with arthritis. Why is this topic important to you?
Since becoming a parent, I’ve had to overcome so many different obstacles and challenges. I was shocked to see that my medications are not tested in pregnant women so I was told by the medical community that I would have to either come off my medications or live with the unknown risk of what the medication could do to my unborn child. This is truly a hard pill to swallow when you’re growing this human being inside of you.
I decided to not bear the risk and stopped my medications when I was pregnant for both of my children. The first pregnancy went well, but things went terribly wrong for my second pregnancy. My RA went into a bad flare in my third trimester. I found out that I have arthritis in a lesser known set of joints – the cricoarytenoid joints – which control the opening and closing of the vocal chords. A flare of these joints can cause breathing difficulties and/or changes in the voice. My breathing got so bad that I went into respiratory arrest during my 37th week of pregnancy. I crashed but luckily I was being prepped for a caesarian section. I think somebody upstairs was smiling on me as both me and my little boy could have died that day.
Caring for young children can also be demanding for people with arthritis. But when I look searching for information to help me through these challenges, there was hardly anything available. For example, how can I open this car seat when my hands are so badly damaged from RA? How can I carry my child around for hours on end when my body hurts so much? I found the fatigue particularly difficult to manage. My children were never great sleepers so I turned into a train wreck in no time at all.
What do you hope the survey will accomplish? What will it be used for?
The survey will identify the information needs of people living with arthritis when they are navigating through pregnancy and parenting. The survey is intended for individuals living with arthritis and for people in their social support network (e.g. spouses, family members, rheumatologist, occupational therapists). The survey asks respondents to indicate the importance of certain topics during pregnancy/prior to conception, and parenting children in different age groups.
The survey results will be analyzed and used to develop an educational resource for pregnancy and parenting with arthritis. Similar to how the survey questions are laid out, it is intended that the educational resource will provide information based on the different stages, such as pregnancy/prior to conception, parenting younger children (newborn to age 5), parenting school age children (age 5 to 12) and parenting older/adolescent children (age 13 and up).
It’s incredibly important to hear from the broader community of people living with arthritis to see what they think is important and what they would like to know more about.
Where can my readers learn more and take the survey?
You can learn more by visiting this page on the CAPA website. There is a link to the survey, which is available in both English and French. Please share the survey information widely as it is crucial that we hear from as many people as possible!