Thank you to Emily Boros-Rausch, Creative Director at MiaThrives, for sharing her journey with us as she navigates her pregnancy living with a rare disease. We also chatted with Emily on a facebook live and you can watch that video HERE.
When I was just a few days old my mother was gently rubbing my finger when she watched a blister form that appeared like a burn. She had a terrible feeling that something was wrong; not long after I was diagnosed with Epidermolysis Bullosa (EB for short.) A rare genetic skin disease, that causes extreme skin fragility and blistering with the slightest friction. While many cases of EB are hereditary, some are not and in my case no one in my family had ever even heard of EB before. EB is a genetic mutation that occurs very rarely and there are only estimated to be 500,000 cases worldwide.
Rising to the challenge of EB
Skin is the body’s largest organ and EB affects the skin both externally and internally and can affect almost every aspect of your day. Living life with EB has always had its challenges but I have always been able to adapt. Some of my personal challenges have been dealing with blisters in my mouth from eating and fighting skin infections from open wounds and blisters. Clothing and shoes take a lot of extra consideration because just the friction of jeans on my back can cause damage to my skin. Growing up I was not able to participate in sports and many other activities due to the risk of injury but it meant that I focused most of my time on other activities such as art.
I always knew one day I wanted to be a mother. I wasn’t sure how but I had a strong feeling I didn’t want to miss out on this dream out of fear of how EB would impact my pregnancy or my baby. One of those fears was knowing that with the Dominant form of EB there is a 50% chance that the baby would also have EB but because I had always had to learn to navigate and adapt with living with EB, naturally navigating pregnancy with EB has been no different.
Pregnancy and EB
When my husband and I discovered we were expecting we were over the moon. Our little family was growing and we couldn’t be more overjoyed. We decided to keep the gender a surprise and love daydreaming about whom this little human will be. However there is also a bit of concern as we are faced with thinking about and planning for all the things no parent wants to think about. Although we try to stay positive we need to plan for the worst to make sure we are prepared for if the baby also has EB and to insure they have the best care. It can be hard to think about what things will be like if our child is born with EB, we need to prepare ourselves for the possibility our child is born without a large area of skin. Even thinking about what it would look like to see tiny bandages covering our baby’s body sometimes makes my heart sink into my stomach.
But it’s not just thinking about our baby but I also need to consider what the impacts of pregnancy would have on my own body. We were unsure how my body would handle pregnancy and how my skin would stretch. And, of course, we are trying to make informed decisions about how the baby would come into the world, if we would try for a natural birth or schedule a C-section has caused me a lot of stress and anxiety. I live in a small city and at first we weren’t even sure if I could stay here to deliver the baby or if I would have to travel to a larger city and with all the restrictions because of COVID-19 there were more concerns and possible complications. To our amazement our local hospital and its medical team has rallied together to educate the staff about EB and ensure we are doing everything we can to safely bring our baby into this world. I have been working hard to advocate for my baby and myself and it has been so reassuring to know that the Moncton Horizon Hospital has been listening and assisting our little family in every way they can. It brings me peace of mind knowing I don’t need to travel for medical care during COVID-19. Despite the hospital not previously having an EB patient they have researched and prepared for us and they are ready to make me the first woman with EB to deliver a baby at their hospital.
Advocacy and Resources
Knowledge can be very empowering and accessing that knowledge has personally helped me accept that my child might have EB. Part of learning to advocate for proper health care is just knowing there are many resources available to you, all you have to do is ask for them. Resources such as Nutritionists, Lactation Consultants, Neonatologists and more are there if you need them. Accessing these resources has also given me hope that I have done everything in my power to prepare for that possibility, to the best of my ability. That’s part of the important part of advocating for yourself and your child. I am thankful for the doctors and the healthcare professionals that have gone above and beyond.
Building Community
Working to build community and advocacy for the EB community has been a deep passion for me. It is close to my heart. Living with a rare disease you can often feel isolated and alone; so many people with EB never encounter another individual with the same condition.
For my undergraduate thesis at OCAD University I conducted a study and designed a line of fashion forward bandages for people living with EB. The opening night of the graduate exhibit there was an amazing turn out from the EB community including Melissa Vassalo Idiens, she was the first woman I had ever met with the same form as EB as me. Not to mention she was also a new mother and seeing her with her daughter Mia brought me hope that I would also one day become a mother.
Melissa founded MiaThrives, a Canadian Charity dedicated to supporting the emotional needs of Butterfly Children (people with EB are often referred to as Butterfly people because their skin can be described as being as fragile as a butterfly’s wings.) Melissa’s daughter Mia is a fourth generation family member born with EB and she wanted to empower her daughter and other children with EB to enjoy a social life filled with friendship, inspiration, belonging and purpose rather than one lived in shame and isolation.
In 2019 I was overjoyed to join Melissa and the MiaThrives team as Creative Director for the organization. My role at the charity gave me the perfect platform to voice my challenges and compile resources and information I wish I had access to growing up and now during my pregnancy. Every step of pregnancy has come with extra planning and research that was often challenging to find due to limited research on rare diseases. Now I am sharing what I have learned with the EB community. We are proud at MiaThrives to now be putting out free downloadable PDFs such as Birth Preferences Plan, Hospital Card Quick Facts and Hospital Checklist for Mama & Baby with EB specialty items.
In addition every week MiaThrives puts out a vlog called EB Hacks sharing tips and tricks to living your life to the fullest with EB. Over the course of my pregnancy many of the hacks have been related to pregnancy, postpartum and newborn care. Through events, video storytelling, podcasts, blogs and much more we are creating a positive community for children and people with EB. It is all part of building a strong community of people thriving with EB. I am thankful knowing if my child does have EB they will have this amazing community of support behind them.
MiaThrives is a non-profit organization dedicated to supporting the emotional needs of Canadian children living with Epidermolysis Bullosa (EB). Our goal is to empower this generation of Butterfly Children to enjoy a social life filled with friendship, inspiration, belonging, and purpose rather than one lived in shame and isolation.
You can learn more about MiaThrives on their website at https://miathrives.org/ as well as on their social media.
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