Maria Bellefeuille is the NORD Rare Action Network Volunteer State Ambassador for Illinois. In advance of this weekend’s Living Rare, Living Stronger Patient and Family Forum, Maria answered some questions about being both a rare disease patient and advocate.
Please tell us about yourself and why you decided to become a rare disease advocate?
I am a thirty-five-year-old wife, stepmother and cat mother to four! I was diagnosed with cystic fibrosis at six months of age when the life expectancy was less than 10 years old. My diagnosis in 1984 came with many uncertainties so my parents nurtured me to live a normal life which led me into adulthood wanting to learn more about my diagnosis. As an adult, I learned that advocating for myself was important and many people do not have the voice or tools to learn how to advocate for themselves. With the guidance of doctors and the Cystic Fibrosis Foundation, I decided to start my advocacy journey ten years ago. In the last three years, I found my passion and started advocating for all rare diseases.
What challenges have you faced when advocating for rare diseases? How did you overcome these?
Some of the challenges when advocating for rare diseases include understanding underlying issues such as access to care and limited resources for rare disease patients. I can not say I have overcome these issues but I used networking with others to familiarize myself with their struggles then reached out to policy makers with their stories and contact information for further assistance.
What is something that you wished you had known when you first became a patient advocate?
As a rare disease patient and advocate, I was overwhelmed at first by how many rare diseases there are but soon I learned that each patient story has similar struggles and those were the key points to advocate. These lives show power, independence and motivation in their own ways.
What has your experience as a rare disease patient taught you?
As a rare disease patient, I became knowledgeable of my own disease before finding the right care team. My care team listens to me about my concerns and we make a plan. I have learned to be open minded on trying new ways to navigate routines and situations to achieve my optimal health goals.
What are your top tips and/or advice for living well with a rare disease?
Prioritizing and organization are some tips for living well with a rare disease. I set reminders for medication refills and keep medications handy in different areas of the house. For example, my morning pills are where I prepare my coffee and my dinner pills are on the table. I used to make lists to prioritize however the lists started to feel overwhelming when I didn’t have the energy to complete them so instead, I made weekly goals instead of daily. Best advice I would give is to find a flexible routine that works for you. Flexible routines allow you to use them when you are also away from home. Keep a bag ready in case of emergency that includes times you take medications and where you may fill them, this will help doctors and nurses plus allow you to have control of your care even when you may feel under the weather.
What do you wish everyone knew about rare diseases?
As a patient and advocate, I wish everyone would see that we are all different. Cystic fibrosis, for example has over 1,700 CFTR mutations, this means each CF patient can experience something different. Most rare diseases aren’t textbook so when you meet someone with a rare disease don’t assume their experiences, ask questions.